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 Desperate For Help: Chronic, Non-Stop Migraines
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 06 2015 :  08:26:14 AM  Show Profile  Reply with Quote
Hi girls -

I wouldn't even put any of this out there, but right now I'm desperate for help. Please help, if you are able. My husband has been suffering with constant, non-stop, round-the-clock debilitating migraines for a couple of years now. Well, in all fairness, he has had them for years, but never at this level of pain. On a scale of one to ten, his daily "normal" wake-up pain is about a six. It doesn't take much to raise that number to over the top of the scale. Most of the time he is at an 8 or 9. He has been on a horrific cycle of "try this, try that" medications and treatments, most recently having a round of 31+ botox shots in his head trying to ease the pain. After almost three weeks, he still cannot wear a ball cap or lay his head on a pillow. Most nights, he "sleeps" on his stomach, face down, holding his face in his hands. (He never gets real sleep or rest; he is exhausted and suffering with debilitating pain.) We saw his neurologist and he said that this reaction, though very rare, is definitely something they do see sometimes, but he says he still wants to continue with these injections two more times - in November and again in February. I can't even fathom what that will do to him, but the doctor is hopeful that these injections will eventually work. If it doesn't work after three rounds, they will have to try something else. If it does work, he is going to potentially need to have this poison injected into his head for the rest of his life!

My husband is changing. I hardly know him anymore. I am frightened for him and by the changes I am seeing in him. His pain is absolutely debilitating, and he is having a tough time coping with simple daily tasks, let alone anything more complex that would normally be easy and natural for him to do. They have done all sorts of tests, scans, etc. Right now he is exhibiting signs of dementia, but since all the scans are coming back "unremarkable" at this point, they're attributing all these other functioning and cognitive issues to the headaches and bi-polar disorder which apparently had gone un-diagnosed most of his life. The cognitive specialist has warned me not to get too excited over the tests coming back negative right now, though. He said it is quite possible that he has FTD (frontal temporal lobe disorder) or CTE (chronic traumatic encephalopathy - the disease many football players have as a result of brain injury), because he is definitely exhibiting signs of both. It just may be too early to detect at this point, and it could be a couple of years before we have any kind of diagnosis. The CTE can't actually be diagnosed until an autopsy! He is suffering beyond measure, nothing is working, and our lives are falling apart. I'm desperate - DESPERATE to help him.

We have tried gluten-free, we have tried wheat-free, we have tried meat-free, we have tried dairy-free, we have tried sugar-free, we have tried caffeine-free... If you can name a "-free," we've tried it. We don't drink or smoke or do drugs. He is usually more active than I am, but right now, understandably, he just can't do much at all. We do as much organic and natural as possible. We've tried incorporating supplements and vitamins and coconut oil to help. I've removed anything scented I can think of that may be lurking in our home. I've tried removing typical allergens from our diet and home (even plastics to the best of my ability), but we have a big old Victorian on a main street - dust bunnies do appear. I don't think I can even list all of the things we've done. They've tried him on so many different medications, but they all seem to just exacerbate his pain and other symptoms; and the roller-coaster of being on one thing and off another certainly did not help him. Right now, he is down to just one, and it is very mild. Understandably, he is not the same person anymore, and his behavior is so erratic and unpredictable. Most of the time he is withdrawn, angry... Anything that breaks his concentration causes him to blow, because he is trying so dang hard to concentrate on the task at hand. His demands are unreasonable, his thinking is heavily clouded. He speaks about not seeing himself live like this for very long. Break and frighten my heart. This is just not my husband. I feel helpless; I just want to help him feel better and get his life back on track. He has been off of work for a short while in order to get therapy, but I don't think it is helping very much.

I need your help - HE needs your help - if you have any ideas or suggestions. At the very least, which is truly probably the very most, please pray for him. Nobody should suffer like this, nobody. It's horrific.

Thanks so much in advance for your help and prayers. You girls are the best.

Hugs and love -

Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

hudsonsinaf
True Blue Farmgirl

3047 Posts

Shannon
Rozet Wyoming
USA
3047 Posts

Posted - Sep 06 2015 :  09:04:08 AM  Show Profile  Reply with Quote
Nini - (((hugs))) I have been and will continue to pray for you, your husband, and your family. There are a couple things I can think of that might help... but they are controversial in whether they really help or not... My first suggestion would be seeing a chiropractor. I can personally testify to that helping with my migraines! My second suggestion would be looking into a detox... mercola.com has a metal detox that worked really well for our family and others we know. There are also liver detoxes that are herbal, for example the one from bulkherbstore.com Essential oils MAY help decrease some of the pain... we use (I sell) Young Living - and a combination of peppermint, roman chamomile, lavender, and frankincense effectively get rid of any headache I am fighting. Also, I am sure they are keeping an eye on this, or at least I hope so, but if your husband's electrolytes are out of whack, this too could cause multiple issues... It took almost 20 years for them to send me to an endocrinologist to figure out why my potassium was low, which was causing multiple issues. But most of all, I will continue to pray!!!!!!! Love you my friend!!!

~ Shannon

http://hudson-everydayblessings.blogspot.com/
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prariehawk
True Blue Farmgirl

2914 Posts

Cindy

2914 Posts

Posted - Sep 06 2015 :  11:23:13 AM  Show Profile  Reply with Quote
That just sounds awful that he's suffering so. I don't have any remedies but I will definitely pray! Could it possibly be due to something in the environment? Has your home been tested for black mold? Lots of older homes have it. I will pray for a decrease in his suffering and for his peace of mind. No one should suffer like that.
Cindy

"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit
"In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers

Visit my blog at http://www.farmerinthebelle.blogspot.com/
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CindyG
True Blue Farmgirl

293 Posts

Cindy
Fairfax VA
USA
293 Posts

Posted - Sep 06 2015 :  1:52:44 PM  Show Profile  Reply with Quote
Having done some marketing work on the introduction of Imitrex back in the day, I interviewed numerous physicians who treated migraines and patients who suffered them. So While I am very familiar with the symptoms and what treatment WAS, there have been incredible advances in the medical treatment of them in the past 5-6 and I am not particularly familiar with these.

All that being said, several of the doctors with whom I spoke talked about the importance of looking at the WHOLE patient and not just the headache. This goes for many conditions, but it can be especially important to something as elusive as migraine treatment. So my main question is do you have one very, very good doctor in charge of your husband's situation or are you seeing various doctors individually? If you have a female doctor in charge it is even better - studies have shown they really do take more time and listen more to patients.

Also have you been to a pain clinic? Some of the doctors talked about the stress of the pain of the chronic or recalcitrant migraine being such a contributing factor that until you get the stress reduced (and pain clinics can be very good at this) you cannot get ahead of the pain. Kind of a chicken and egg thing.

A biggie: have you seen an Integrative Medicine practice? I looked it up and UPMC at Shadyside has one. Talk about treating the whole patient! They look at everything - a huge patient history, metabolic issues, stress issues often related to metabolic issues, etc. Therapies can include acupuncture, yoga, all kinds of supplements, possibly IV therapies, biofeedback, chiropractic, etc. They do not restrict themselves to treating with just medicine, and often find things "regular" doctors miss. Sometimes they find digestive issues that can be revered with certain simple things and -bingo - the headaches reduce.

A friend of mine found out she had a severe zinc deficiency and once the supplements kicked in, her IBS and headaches reduced greatly.

I would encourage you to research integrative medicine if you are not already familiar with it, and if it sounds like something you might want to try, give a call to UPMC Shadyside.

I would say "good luck", but I feel like luck should have nothing to do with this! Prayers for finding the right doctors/practitioners and of course, for finding relief.
Cindy
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 06 2015 :  2:24:31 PM  Show Profile  Reply with Quote
Hi girls - Thank you so much for your suggestions and prayer!

Shannon - Thank you! He did see his chiropractor, but the chiropractor said that this is beyond what can be done through chiropractics. The detox actually makes a lot of sense, since he has been a welder, pipefitter and in the field since he was about 9 years old. I will ask our doctor before trying anything, but yes, that does make sense! And I will look into the potassium situation with his doctors as well. You know, they've run so many tests and done so much bloodwork, you'd think if it was something like that, they'd already know; but truthfully, anything can be overlooked!

Cindy - Thank you so much, really. To me, prayer is everything. GOD is everything. I do not know why my husband must go through this, but I do believe God is ultimately in control! You do bring up a good point.. we have not had the housectested for toxic mold. I would think if anyone would be affected that by it, though, it would be me, because I`m home the most. Having said that, however, he works in all sorts of old buildings. And since he is the smallest guy on the crew, he is usually the one to go into the deepest, darkest, cramped recesses of a building. He could conceivably have been exposed to something that the other guys have not, and that could've happened repeatedly over the years. I will ask him about having the house tested. You never know. I was concerned at one point that maybe it was radon, too, but his symptoms don't coincide. I will talk with him about it, though. Thank you for the suggestion!

Cindy - Thank you, as well! Imitrex injections do not even take the edge off for him. Prior to the botox, he had other types of injections in his neck and at the base of his skull as well, but nothing worked. NOTHING takes the edge off - nothing relieves the pain. He has an entire team of doctors he is working with at the UPMC pain clinic(UPMC headache clinic). He has been to their facilities both in Shadyside and in Oakland. They have been wonderful at trying to figure out the problem, but they keep coming up empty. Addressing it through medications, lifestyle changes, etc. is just not working. He speaks as if dying would be his only relief, and sometimes, when it is so bad, it actually looks as if he is dying. Horrific. Unfortunately, we had UPMC insurance, but it changed over to Highmark on September 1st. That being the case, there is a great provision for continuing care with his UPMC doctors through the end of December and possibly through the end of 2019; HOWEVER, he will not be able to start with any new doctors within the UPMC network. UPMC will not be an option under the new insurance at all. It is extremely, extremely frustrating. I will, however, see if there is some sort of integrative medicine facility available through Highmark providers (and especially a female doctor - what you said doesn't surprise me one bit!). Thank you for the suggestion. All of his doctors do confer before making any medicine changes, or at least tell us to check with the other doctors before he takes anything, and because they are in the UPMC network, all his information is available to them at the touch of a button. We have looked into holistic MDs, and found one that is highly recommended locally, but new patients are on a nine month waitlist to get in, and they only take cash (or, at least, did not accept UPMC insurance). It's worth the wait and every single penny, but that is not helping him right now, you know? I will check, however, to see if this doctor accepts the new insurance. The one good thing with the new insurance is that it is BC/BS, and according to the handbook, he can be seen at any hospital or provider in the country who accepts BC/BS. We live only a few hours from Johns Hopkins. I plan on calling them once we have had this next round of appointments with his doctors. As far as the zinc - we have tried that, too. I even looked up the medications he has been on these past few years to try to figure out what they might be depleting from his body so that we could supplement, but I am not finding anything. Thank you so, so much for looking into this for me, and also for the suggestion about integrative medicine. Even if we can't do it with UPMC, there has to be an alternative for him through our new insurance.

Love you, girls. God bless you. And thank you!

Hugs -

Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!


Edited by - Ninibini on Sep 06 2015 2:48:42 PM
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Calicogirl
True Blue Farmgirl

5176 Posts

Sharon
Bruce Crossing Michigan
USA
5176 Posts

Posted - Sep 06 2015 :  3:51:42 PM  Show Profile  Reply with Quote
Nini,

I am so sorry that your honey is going through this!!! I wish I could help. Michael gets Migraines from a Traumatic Brain Injury. They were really bad at one point (even had a couple of mini-strokes) but they have eased up some. We started the Paleo diet which is no grains, dairy, legumes, processed stuff, potatoes, refined sugars or oils and it has helped him some. Plenty of water. Has he seen a doctor regarding neck pain? Maybe there is something going on there. Essential oils like Shannon said help ease mine, I have tried herbal tea for migraines. It does lessen it a little for me. I am praying for you, your honey and for the doctors to have wisdom in figuring out what is going on and remedying the situation.

Farmgirl Sister #5392

By His Grace, For His Glory
~Sharon

http://amerryheartjournal.blogspot.com/
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gramadinah
True Blue Farmgirl

3450 Posts

Diana
Orofino ID
USA
3450 Posts

Posted - Sep 06 2015 :  3:57:39 PM  Show Profile  Reply with Quote
WOW so sorry I am taking this all under advisement as my guy suffers from them too. Not nearly as bad.

Prayers

Diana

Farmgirl Sister #273
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Red Tractor Girl
True Blue Farmgirl

3832 Posts

Winnie
Gainesville Fl
USA
3832 Posts

Posted - Sep 06 2015 :  4:13:30 PM  Show Profile  Reply with Quote
Nini, I am so sorry to hear that your husbands is suffering with non-controlled migraines. It sounds like you all have been doing everything possible. Maybe some of the suggestions here will bring some relief while doctors keep searching for better pain control. I will be praying for you and him that better days are ahead soon!

Winnie #3109
Red Tractor Girl
Farm Sister of the Year 2014-2015
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 06 2015 :  5:44:53 PM  Show Profile  Reply with Quote
Thank you so much, Sharon, Diana and Winnie. I appreciate your prayers so, so much. I will keep ALL of you girls and your loved ones in mine, too. I want everyone to be well!

Sharon, they actually did try injections in his neck and the base of the skull, but that did nothing. They thought maybe it would relax his muscles, thus easing the headaches, but all it did was cause him more pain until the medicine wore off. That's kind of where he is with the botox right now, too. He has had several really bad blows to the head since he was a young man (i.e. he was once hit in the head with a crane boom!), so the CTE, or traumatic brain injury, is definitely a concern. We've tried everything you mentioned, with the exception of the omission of refined sugars. Maybe that will help - I am definitely willing to try! They took him off of all caffeine, too, and he has replaced that with plenty of water, which, of course, is so much better for him.

Girls - How can I figure out what essential oils might help? Or, rather, what ones would you recommend? How do you use them? I am clueless, but am so willing to try!

You're all the best!

Hugs -

Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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Calicogirl
True Blue Farmgirl

5176 Posts

Sharon
Bruce Crossing Michigan
USA
5176 Posts

Posted - Sep 06 2015 :  6:05:26 PM  Show Profile  Reply with Quote
I have a diffuser and place drops of a Head-ease blend on it (mine is a plug-in diffuser). Shannon could probably get into more depth since she is using them and selling them.Refined sugars trigger my migraines. Right now Michael is on Sumatriptan for his headaches. He recently went to an orthopedic Surgeon about his neck and back and TBI's were brought up. The surgeon's husband also deals with migraines from one and she told Michael that he NEEDS to take his meds as soon as he feels a headache coming on because not taking it can alter something in your brain. I will have to ask Michael to explain that better to me so I can explain it to you better.

Farmgirl Sister #5392

By His Grace, For His Glory
~Sharon

http://amerryheartjournal.blogspot.com/
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 06 2015 :  6:39:30 PM  Show Profile  Reply with Quote
Oh, geez.. Shannon... I'm sorry! I didn't see that you sell them! I am very intereste, and will try to email you tomorrow. Thanks for the info and pointing that out, Sharon! Hugs - Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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MaryJane
Queen Bee

12824 Posts

MaryJane
Moscow Idaho
USA
12824 Posts

Posted - Sep 07 2015 :  07:28:13 AM  Show Profile  Reply with Quote
I'm so sorry Nini. His pain (and yours from worrying) sounds brutal. What an awful thing for you to be going through. You're getting good suggestions. The integrative medicine clinic holds hope. Hang on, there just has to be a solution.

MaryJane, Farmgirl #1 Plowin' Thru ~ giving aprons a good wrap for 45 years and counting ~
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 07 2015 :  07:43:32 AM  Show Profile  Reply with Quote
Thank you so much, MaryJane. :) Hugs - Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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AnnieinIdaho
True Blue Farmgirl

405 Posts

Annie
ID
USA
405 Posts

Posted - Sep 07 2015 :  8:49:43 PM  Show Profile  Reply with Quote
Hi Ninibini, I used to have migraines continuously also. (not to the level you have described, but debilitating). I finally got the skin prick allergy tests done with over 100 scratch tests on my back. It turned out I was allergic to most plant foods. Plant foods are part of a larger plant family i.e. cantaloupe is in the ragweed family. Many plant foods are in differing tree groups. My body does not differentiate between the proteins in the environment (ragweed field) and eating cantaloupe. (This is only one example but you get the idea). I stopped eating all foods I was allergic to. I started taking Ketorolac a super anti-inflammatory and a Benadryl per my M.D.'s instruction. Now my migraines are maybe one every 3 months. It is such a relief. I never responded to any of the migraine meds, or the anti-seizure or meds used for altitude sickness. This condition is known as Oral Allergy Syndrome. I have no idea if it is part of your husband's underlying cause. But I wanted you to be aware of OAS. If he hasn't done so yet, it may be worth skin testing. I didn't have the gluten issues show up in blood testing, but with skin prick it showed I was allergic to all kinds of grass so cannot eat rye, barley, oats and since quinoa is related to tumbleweed that one is ruled out too since I am allergic to tumbleweed. I eat mostly an animal based diet and if careful to eat good meats and dairy, my cholesterol, blood pressure, etc. are in a very healthy range. I am unable to take vitamins because they are derived from so many things I am allergic to. I can eat a few veggies like cabbage, green beans, peas and a few fruits like blueberries. Also, make sure your husband does not have an underlying allergy to aspirin (salicylates). Salicylates are in many fruits and vegetables and even in honey. I react terribly to salicylates. There are also some molds I am allergic too, hence no cheese. But some molds are prevalent in the air during certain seasons and there is one in particular that causes a whopper of a headache. He can be tested for mold allergies too. I too went to a headache clinic and most tests, scans, MRI's came back negative. It took 7 years to be diagnosed. Thank goodness one M.D. had a best friend who was an allergist and they were talking. His friend asked him to refer me that he suspected my severe continuous migraines were allergen based and it extends into multiple chemical sensitivities to synthetic based personal care products or even herbs. I cannot eat parsley, cilantro, celery, carrots, etc. So if you are allergic to poppy seeds, you may be allergic to morphine. I always ate whole foods cooking from scratch for decades, but was poisoning myself with true healthy foods. But my 25 headaches a month have subsided immensely, so I eat animal based diet. I always wondered why I felt weak and dizzy after a good bowl of oatmeal, and energetic after ice cream. Best to you and your husband! Annie

"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'.
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AnnieinIdaho
True Blue Farmgirl

405 Posts

Annie
ID
USA
405 Posts

Posted - Sep 07 2015 :  8:52:32 PM  Show Profile  Reply with Quote
Oh, forgot to mention a big one! I am allergic to iron dioxide which is in many Rx's. Latex is also in many foods such as bananas, kiwi, and avocados. I know, I know...believe me...my list is pages long, so many delicious foods but the headaches were so horrific it makes it somewhat easier to go without. Take care sisters, Annie

"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'.
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gramadinah
True Blue Farmgirl

3450 Posts

Diana
Orofino ID
USA
3450 Posts

Posted - Sep 08 2015 :  07:16:53 AM  Show Profile  Reply with Quote
Annie first where is Idaho are you?
Second great information.

Diana

Farmgirl Sister #273
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sherone_13
True Blue Farmgirl

2227 Posts

Sherone
Evanston WY
USA
2227 Posts

Posted - Sep 08 2015 :  08:07:51 AM  Show Profile  Reply with Quote
My doctor put me on a low dose of Toprol (a blood pressure medicine) That in addition to Imitrex have been very successful in treating my chronic migraines.

Sherone

Farmgirl Sister #1682

My Blog

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Women are angels. When someone breaks our wings, we just jump on our broomsticks and fly! We are flexible that way!
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AnnieinIdaho
True Blue Farmgirl

405 Posts

Annie
ID
USA
405 Posts

Posted - Sep 08 2015 :  08:55:20 AM  Show Profile  Reply with Quote
Hi Diana, I am in northern Idaho on the outskirts of Post Falls toward Spirit Lake. Have a good day! Annie

"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'.
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 12 2015 :  10:33:33 AM  Show Profile  Reply with Quote
Oh, gosh... Girls... Thank you so much for all of this input.

Annie: I was so taken back by your response about the allergies. I have been telling him I wanted to have him tested for such a long time now. When I read your post, it really rang true for him as well; especially concerning your allergies to the medicines and anything having to do with grass. SO interesting!

Cindy: I actually found out last week that our physician's office is now offering integrated medicine. He is going to be meeting with them in a couple of weeks once they are settled in and ready to go. They will be doing allergy testing as well as other types of therapy and treatments once he has a full evaluation. In the meantime, I've been coordinating new care for him under our new insurance as well. Who knows? Maybe fresh new perspectives will be a blessing in disguise. Right now, though, he is a raging, miserable, messy ball of chronic, debilitating pain. I just want to make him better!

Sherone: He has done Toprol, it only exacerbated the pain and other issues he is having. And the Imitrex doesn't even take the edge off. It's insane. But thank you so much for your insight! I really appreciate it! :)

Hugs -

Nini



Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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sherone_13
True Blue Farmgirl

2227 Posts

Sherone
Evanston WY
USA
2227 Posts

Posted - Sep 15 2015 :  10:16:23 AM  Show Profile  Reply with Quote
Have they tested him for food allergies?

Sherone

Farmgirl Sister #1682

My Blog

www.annapearlsattic.blogspot.com

My Etsy

www.etsy.com/shop/annapearlsattic

My Avon

www.youravon.com/sheronetaylor

Women are angels. When someone breaks our wings, we just jump on our broomsticks and fly! We are flexible that way!
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Cozynana
True Blue Farmgirl

1123 Posts

Kem

1123 Posts

Posted - Sep 16 2015 :  4:35:39 PM  Show Profile  Reply with Quote
Nini, You need to have him tested for Lyme disease, bartonella, and babesia. The last two are all related to Lyme. I can so relate to his symptoms. I use to have migranes that sent me to the ER. I had Lyme rage and couldn't think straight. I isolated and felt so ill. The CDC (Center of Disease Control) state that 300,000 people are contracting Lyme a year in the U.S. I see you are in the state of Penn. You are right in the middle of Lyme country. I can get you names of Lyme Drs to go to if you are interested. DO NOT go to a regular doctor to get a diagnosis of Lyme. I made that mistake and it took 47 doctors to get diagnosed. Again, you are describing me to a tee. Please give me a call (785-475-3395) to discuss this if you are interested/
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Ninibini
True Blue Farmgirl

7005 Posts

Nini
Pennsylvania
USA
7005 Posts

Posted - Sep 21 2015 :  1:55:09 PM  Show Profile  Reply with Quote
Hi girls - sorry it took so long to get back to you.

Sherone - Thank you for the suggestion! He hasn't been tested yet, but is actually waiting for an appointment to do so as soon as possible. I am hoping that will give us something to work with! :)

Kem - I will definitely mention this to his doctors, and yes, I would like to find a doctor to have him tested. He has been to the ER several times, and each time they give him meds that make things so much worse. And the rage... I cannot even begin to describe it. It's almost unbearable to be around. I never knew that the headaches and rage could come from Lyme. I don't know that he has ever been exposed, but that doesn't mean he hasn't. It certainly can't hurt to have him checked! I will try to call first chance I get. We have been so busy with doctors, appointments, phone calls with insurances, etc. It's like this never-ending cycle. And it's very difficult to be on the phone when he's here. But I will definitely try to call soon - or, at the very least email you. Thank you so much for the offer!

Hugs -

Nini

Farmgirl Sister #1974

www.papercraftingwithnini.ctmh.com

God gave us two hands... one to help ourselves, and one to help others!

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Cozynana
True Blue Farmgirl

1123 Posts

Kem

1123 Posts

Posted - Sep 21 2015 :  7:58:26 PM  Show Profile  Reply with Quote
Nini, are you on Facebook? Maybe we could private message and keep a dialog going off and on if needed. Call me anytime, I mean anytime if you have a chance. I get up around 5 a.m. central standard time. I don't work so can make it work anytime. Set a time and I will be available. I will try to find the Literate Lyme disease docs in Penn. Are you close to any other states? Please let me help you confirm or exclude Lyme. It is absolutely nothing to play around with.
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Melina
True Blue Farmgirl

435 Posts

Melina

USA
435 Posts

Posted - Oct 02 2015 :  09:17:20 AM  Show Profile  Reply with Quote
I suffered for many years with migraines, a couple of times a week. Then I discovered I was highly sensitive to egg yolks. Since giving up my morning over-easies, I've never suffered with another. I can eat whites til the cows come home, but no yolks. No estrogen, either. It's worth a try.
Good luck to your hubby.

The morning breeze has secrets to tell you. Do not go back to sleep.
Rumi
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Patsy
True Blue Farmgirl

592 Posts


Illinois
USA
592 Posts

Posted - Oct 04 2015 :  06:44:03 AM  Show Profile  Reply with Quote
Nini,
I cannot help with the physical problem of migraines but I want to address the psychological changes you are seeing in him. Chronic pain and lack of sleep can alter our brain functions over time and can cause mood changes and increase depression. If he isn't seeing someone to help with this, I encourage you to think about it. I work at our Human Resource Center and have talked to folks with chronic pain and sleep issues. The stress of this can actually worsen pain and I am concerned with depression and with being bi-polar, he is at risk. Please ask him to go and just talk with someone outside of his family and friends. He will say things to them that he won't say to you. It might help with things all around. Hang in there and we pray that God steps in and points the way for the doctors to find out what is wrong. God bless.



Edited by - Patsy on Oct 04 2015 06:49:43 AM
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forgetmenot
True Blue Farmgirl

3549 Posts

Judith
Nora Springs IA
USA
3549 Posts

Posted - Oct 04 2015 :  08:21:11 AM  Show Profile  Reply with Quote
All I can offer Nini and DH are prayers. I am so sorry for his and your pain. So, I will say daily prayers for both of you.

Farmgirl sister #3926

"Courage is not the absence of fear, but the belief that something is more important than fear." Ambrose Red Moon
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