I am new to this group, but excited to be a part of it (well, didn't that sound morbid?) and that's because it is nice to know there are other people out there who have experienced what I have/am experiencing and can offer support, help, and advice. I love that!! I posted this originally in the headache forum, but after an invitiation to join this group from marileew, I thought I would post it again here for any additional insight.
For the past ten years I have been suffering with dibilatating migraines, insomuch that I am completely incapacitated for the duration of the migraine (lasting anywhere from a day to three or more days in a row) and oftentimes feeling completely fatigued and depressed afterward. I have tried so many different medicines and nothing seems to help relieve the pain and/or take the pain away altogether. I have tried Zomig, Axert, Amerge, Imitrix, Maxalt, Midrin, Amitriptiline, Enderol, Fluoxetine, Topamax, Verapamil...and those are just the ones I can remember off the top of my head. I have meloxicam (7.5 mg) that I take for the pain and I was taking Zonisamide (100 mg) twice daily but that is not helping me either. I am missing entire days/weeks due to this constant pain and am basically at my wits end. I have a neurologist that I have been seeing, but she seems more intent on passing me pills when I really want to try and find out what is causing this. I normally get about 2 migraines a week. However, recently (over the past few months) I have endured increased migraines (3 or 4 a week) which causes me to miss a lot of work.
I must also add that about six months ago I was diagnosed with thyroid cancer. In April they removed my thyroid along with 21 lymph nodes (14 being cancerous along with the thyroid) and I am currently on a treatment plan. The surgery and cancer treatment has left me severely hypothyroid. Could the thyroid cancer/hypothyroidsm be causing the increase in my migraines? What other options do I have at this point rather than just putting a cold wash cloth over my head and eyes, sleeping in a dark room, and begging the good Lord above to take the pain away? I feel so helpless and really don't know where to turn. Any help or advice would be greatly appreciated. Thank you.
Thank you so much for joining, it's nice to meet you!
The word "migraines" can be thought of as two sort of things: Migraine Disease and a Migraine Attack. Migraines, for the most part, are a genetic neurological disease. Pretty much all of the time, migraine attacks are caused by the migraine disease itself and there is no other underlying cause. So, in almost all cases, nothing causes migraine but migraines. ALTHOUGH, there are exceptions. And, usually I don't talk about these exceptions much because they are very rare but in your case you mentioned something very important that could be a definite exception and that is your hypothyroidism.
In thinking about the neurological disease migraine we can compare it to a more well known disease in order to understand it better... I often use epilepsy or diabetes as an example because those are diseases that people who I know understand well. For this simile I'll use diabetes and hyperglycemia. A healthy person's body regulates their blood sugar in a very strict range no matter how much sugar they eat, but for someone with diabetes their body does not regulate their blood sugar in this manner and their blood sugar can sky rocket if they eat too much sugar and that's called hypoglycemia. So, we have the disease, diabetes, and the illness, or acute attack, hypoglycemia. Healthy people do not experience attacks of hypoglycemia... but in rare cases other diseases and illnesses can cause a hypoglycemic attack as well, such as: sepsis, complications due to surgery, ingestion of toxic substances, severe vitamin deficiencies, organ failures and disorders, tumors, as well as a number of diseases. So, think of it the same as with migraines... Migraine is a genetic neurological disease BUT migraine attacks can sometimes (rarely) occur because of another disease as well.
In almost all cases, even cases of severe chronic migraines, migraines are caused by the neurological disease migraine. In this case, the first line of treatment is one of the three classes of daily preventatives: antidepressants, anticonvulsants and beta blockers. Botox is often also tried as a preventative measure and used every three months. From what you mentioned, you have tried two antidepressants (Amitriptiline and Fluoxetine), two anticonvulsants (topamax and Zonisamide), one beta blocker (Propranolol, you listed it under a brand name) and one calcium channel blocker (Verapamil). So, yes, you really have tried a lot! I can see why you are at your witts end! But don't worry, we are all here to brain storm with you and to come up with ideas and to support you when you need support!!!
My questions about preventative treatment: have you tried Botox injections yet? If not, it would seem like it was time to give the Botox injections a try.
Notes about acute treatment: Okay, it seems like the triptans haven't worked for you... I think you tried them all! Does the meloxicam work well for your pain? Meloxicam is an NSAID. Another popular NSAID that migraineurs use is Naproxen, although if the Meloxicam is working that's great. Other acute treatments for migraine headaches include what used to be the first line of treatment prior to the invention of triptans: the ergot alkaloids. Have you ever tried a medication like Cafergot or DHE (Dihydroergotamine). The ergot alkaloids, although they have their side-effects, might be an acute pain management option that you want to talk about with your doctor if you find that the Meloxicam isn't working to completely stop the pain.
For people who have the neurological disease migraine, migraines attacks are sometimes triggered... often by things outside of our control such as as changes in weather. Sometimes they are triggered by things within our control such as food products (wine, caffeine withdrawal, msg) or allergies we could avoid or stress we could lessen.
But, you have asked if there could be a connection to your hypothyroidism, and I think that, yes, there could be a connection. There is a known medical connection between migraines and thyroid conditions. So, it is possible that in your specific case, your migraine attacks are being caused by your hypothyroidism (and possibly prior to the hypothyroidism, by the thyroid cancer). I guess then if this is the case, it would just be really important to make sure your thyroid meds are always at the correct dosages, which maybe means getting blood work done prior to each prescription being filled at the moment, just until things settle from the surgery.
It's nice to meet you! I'm sorry I couldn't be of more help... actually, I'd love to ask you some questions about the calcium channel blocker you tried... but, do let me know if you've tried Botox yet and let me know how your thyroid levels are these days. Stay in touch! :)
Oh Crystal, my husband and I feel your pain. We celebrated 9 months of constant 24/7 chronic migraines with intermittent clusters on 11/1. It's debilitating and depressing and we keep looking for answers. I don't know much about the medications, that's my husbands department and he's a trauma nurse specialist suffering from this. It tears your life apart and makes it seem like there's no road to recovery.
I can suggest that if you aren't getting answers from one doctor, search out another. If that one can't help you find another. We are currently at the Michigan Head Pain Neurological Institute, have been to Diamond Headache Clinic a bunch of times as well as local neurologists who cannot help. Turned down by Mayo, saying they can't help.
We will keep searching until we find answers. Please don't give up, keep trying and know that here, you are not alone.
You're sorry you couldn't be of more help? Oh, my friend, you have helped me so much. Just knowing that someone else out there not only understands, but has a lot of good advice, is such a relief. Sometimes I feel like I am the only one who experiences such severe migraines. Thank you so much for the thorough explaination and examples and help. I truly appreciate the time you have taken to respond back to me.
Regarding my thyroid cancer, I am in the middle of the treatment plan. In fact, in the next couple of weeks I have another appointment with my endo and at that time he'll do more blood tests to see where my TSH (thyroid stimulating hormone) levels are and more than likely increase my Synthroid dosage. When I had my blood tests taken in late April (after the surgery) my TSH levels were at 39.78. He increased my dosage of Synthroid and set up another appointment for more bloodwork in three months. I went back at the beginning of August and had tests done again and my TSH was down to 28.46. So, it's working...just so dang slowly. I have no idea what my TSH levels are now, but I should find out in the next couple of weeks. I also have body scans and ultrasounds that I will be doing around the same week. The six month appointment after surgery is the big one, so they tell me. This is when they will do thorough tests and exams to see if the cancer has been effectively killed from my thyroid and the surrounding lymph nodes. If it has, we're doing good. If it hasn't, then we'll probably do another round of radioactive iodine and some more waiting and blood tests. Such has been the story of my life recently. :)
Now, the migraines. Oh! What I wouldn't give to have those gone completely. All your information about migraine attacks and migraine disease makes perfect sense. I realize that I might not ever know why migraines started for me, but I feel so strongly that I can find an effective treatment plan that will take care of the pain and the consistency at which they come and also keep me awake and functional throughout the day. I just had an appointment with my doctor today. I woke up with a migraine, so it was good that I had an appointment today. :) She took me off everything I was on for my migraines since they are obviously not working. Even though I have Meloxicam I have not taken it because anti-inflamatories really bother my stomach no matter how I take them (with food, milk, water, etc.). My doctor also said that taking anti-inflamatories can cause rebound headaches just like Tylenol can. She put me back on the Verapamil. I was taken off that before (a long while ago) but I honestly can't remember why. I don't think it was working as effectively as my neurologist wanted, so she tried me on something new. But my doctor now is increasing the dosage amount and said that maybe the reason it wasn't working before was because it wasn't the proper dosage amount. Keep your fingers crossed that it will work. She also gave me a prescription of Zomig to take at the first sign of a headache since it worked really well before. We'll see how it all goes. I'm also going back to my old neurologist (I went to a different one because I have moved a couple of times since I last saw him). I really liked him before, so I am hoping he can help me out again.
I'll definitely keep you posted on how things are going with me. I love this group and am glad to be a part of it. There is much we can learn from each other. :) Yea!! Thanks again.
Thank you for your response. I am so sorry to hear about your husband. It's such a helpless feeling when you go through the intense pain. I can't imagine having a migraine for 24 hours, and seven days a week. What does/did he do to relieve the pain and still be able to function? How is everything going for him now? And why did Mayo say they couldn't help? I am anxious to hear how things are going. I know it's just as tough on our loved ones as it is on us when we have migraines. I can't tell you how many times I witnessed the pained expressions of my husband when he saw I was in the middle of a really bad migraine. Keep helping him out (as I am sure you are already doing). I am extremely grateful for my husband during these times. Somehow, just having him near me makes me feel a little better. :) I'm sending good thoughts your way. :)
Welcome, we are glad to have you. So sorry you have had to endure such terrible pain. Marilee really does help so much and she said what I think of too. Prevention is the key, and I hope you can find a med that works for you.
Please keep us posted. My sister had many lymph nodes removed with her cancer also, she did suffer even more with the migraines while undergoing her cancer treatment. Hope all goes well.
I have severe daily migraines. For the first 2 years, a didn't pass when I wasn't in some amount of pain. I saw a neurologist at a headache center. I made my doc do all sorts of tests to try to figure out what was causing the migraines. Finally, I had to accept the fact I had migraine disease and there was no test for it. At that time I agreed to be hospitalized for infusion treatment. Basically, every 4-6 hours a nurse brings in 4 bags of fluids and drugs, and hooks them up to my IV. I like to think of it as dumping as much chemicals in my system as possible to burn out the migraines. After a week, I was actually pain free. I was so giddy from relief! If only it could last forever... Ever since then my migraines have responded better to the meds my doc prescribes. However, the only things keeping me out of the ER and hospital are the shots of DHE and, when they don't work, Zyprexa (it is an atypical antipsychotic that has only been used for migraines very recently). It is definitely a rough life to lead. Being in pain that is so severe at times and for so much of the time is so depressing and lonely. I try to focus on the things that mean the most to me - my son and my husband. They are what keep me going on those really hard days.
Thanks so much for your response to my post. I truly do appreciate all the support and efforts made by those in this group. It has been a relief to find others who understand and are willing to offer help and support for me as I go through these migraines.
I liked what you said in regard to having to admit that you had migraine disease. I have just recently come to this conclusion. I think I was trying so hard to find a reason for this pain that had invaded my body so intensely and so suddenly that I figured there had to be a cause. I prayed so hard that the Lord would take the migraines away completely, but after a few weeks I knew that was not something that was going to happen and I would continue to have these migraines. I think it was at that point that I felt so helpless. I recently (about a week ago) had an appointment with my doctor where we discussed my migraines in detail. Since then I have been placed on 240 mg of Verapamil a day, a calcium-channel blocker. I tried this before but it didn't work. My doctor thinks it was because it was at a lower dosage (120 mg) so she increased it. I am happy to say I haven't had as many migraines. I had one yesterday, but I think that had more to do with the weather than anything.
Thank you, again, for your helpful advice. I will definitely try to focus on the positive blessings in my life when I experience a migraine, and I will know there are so many other people out there, like you, who understand. Thank you!!
Hi! I wanted to introduce myself... After reading your post my heart truly goes out to you! You honestly have suffered a great deal I can tell. Sometimes in my "own world" I feel like it's been hades dealing with the stuff I have. However, in respect for the seriousness of your condition(s), I can't say I myself understand how you feel; I don't. I have no advice to offer, I'm sure your surrounded by many knowledgeable doctors. But, I can say that when it's just you in a room by yourself in tremendous pain; your not by yourself. Not to infringe on whatever your faith may be. However, I know the one who made our bodies is always very close. Even in my own state w/ chronic headaches & migraines, there have been times when nothing was working I'd make a plea to that one. Of course the pain would still stay sometimes (ha); but it would just make me feel better to believe I was heard...I wish you the very best through everything and hope you will keep everyone updated here so that I can follow it. I will remember you in my thoughts (and prayers)
Hi there! Thank you so much for your response. I appreciate your kind words, and helpful advice. I, too, have spent countless hours pleading to God to take the pain away, and you're right sometimes the pain would still be there, but suddenly I was a little more relaxed, or I was able to sleep, or I just felt better knowing that He could hear me. It's those quiet moments, when I feel most alone and in pain, that I know He is there and can hear me. For whatever reason, I am meant to have this sickness, but I know that He would not give me anything that I cannot overcome either by myself, with someone else's help, or with His help. I think I forget that at times when I am in the midst of a really bad migraine. Thanks again for keeping me in your thoughts and prayers. I will definitely do the same for you! :)
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