angelloz

I am 100% certain my severe migraines are somehow connected to my serotonin levels. I keep wanting to PM you and ask some questions about this and see what you think. When I have a good day I will do so!.

I have thought about this too but haven't tried it yet!

Hello Mike, Hang in there. My sleep pattern is much better now and I have regained a bit of the weight loss back but not much. Here are some things that helped with the insomnia...listening to books on tape or just the radio with my ear buds. This seemed to keep my mind from racing and calm me a bit, slow deep breathing techniques, you can find them online. I took some of my husbands flexeril a few times ( muscle relaxer ). It helped but didn't want to take it too often. Even with these techniques I would only sleep for maybe two hours at a stretch them be wide awake. What I found very odd was that before all this I needed a full 8 hours. I was still teaching when all this began and even though I wasn't sleeping I was fully alert during the day. Never feeling fatigued , this went on for several months. Things slowly improved and now, five years in, I sleep about 6 hours at least. I can even nap again. Sometimes in the beginning as I began to doze off I would jerk wide awake. I think I would nearly stop breathing as I started to get sleepy and my body would wake me up. It felt like every system in my body forgot what to do.I think I could gain more weight now but I have severe migrains triggered by many food so my diet is limited. Keep the questions coming we are all here to help.

Mike, I hope to write more about your concerns later but today was my grandson's b-day and I am fried . Quickly, from the beginning I would get the forceful heat beats, very scary, sometimes just from turning over in bed. Yes, different from the tachycardia. I think mine was from low blood volume diagnosed at the Cleveland Clinic. I also began with extreme weight loss and insomnia, like you thyroid checked, checked for a pheo etc... I will try to write more tomorrow after my doctor appt. Just wanted you to know others get it too!!

I think it is always best to bring up all symptoms. Sometimes doctors like to be handed a list that you have prepared then they can ask further questions...however, I had one doctor that saw me pull out my list and said, " tell me three things you would like to address or is your worst problem ". Since the "worst" , changes on a daily basis this made me rather angry. I didn't see that doctor again. Good luck!

I get the blazing heat throughout my body also...and here is the strange part, there is an odd pattern for me. I can lie down to go to bed and feel fine temperature wise..then about 3-4 minutes after lying in bed here comes the heat...off go the covers, sometimes I put ice on my wrists. I can wake up in the night and within a few minutes of waking up the heat builds again. it is like my body cannot not tolerate and type of change. I know what you mean about doctors and appointments, sometimes one just needs a break from it, but you still want some concrete answers. Best of luck!

I was tested at the Cleveland clinic and was hypovolemic. I drink all day but I am never really thirsty. That was something I noticed when I first began to have odd symptoms. It was like I lost my sense of thirst. Once in a blue moon I get very thirsty before bed but this is rare. I keep on drinking though....

What a wonderful experience. Thank you for sharing!!

For me any artificial sweetener triggers a migraine. MSG is another problem that is hidden in many ways. I have a table that lists things, you might see listed under ingredients, that probably contain MSG...this includes natural flavoring. MSG can be natural not chemical but it is still a trigger for me. Whey or soy protein are on the list as well. Migraines may or may not be related to my autonomic issues as I had them long before autonomic problems began, but it sure makes me more symptomatic all around. For one thing it is hard to stay hydrated when you are throwing up etc... Sigh...

I have a horrible problem with migraine triggers and cannot drink sports drinks, vitamin water, even the thermo tabs have natural flavors that can be a trigger. I have read many of you make your own solutions. For myself I have found Pacific organic oat milk works very well. It has sodium , potassium, a fair amount of calcium, vitamin D and riboflavin. No ingredients that trigger my migraines. I get the plain original. It tastes very sweet even though there is no added sugar so I dilute it with water to suit my taste. Just thought this might help someone else with the same issues. Happy Tuesday to everyone!

Wanted to add that although I have mild to medium migraines every day..once every month, give or take, I have a horrible one that lasts 3-4 days. Before hand I am anxious with yawning and fatigue..sometimes loose stool..sorry if that is TMI...Should also mention I am post menopausal so they cyclic nature is not hormonal.

Did the chest pain persist? I have had severe chest pain with clammy , nausea and made the ER trip as well. Always best to err on the side of caution. If it goes away I am ok but when it keeps going and I feel terrible i start to get concerned. So sorry for the rough start to 2015...we will hope the second half will improve!!!! Keep on trying the exercise! It sounds like maybe you used a muscle you hadn't in awhile?? But the BP question doesn't really fit with that thought. I have had mine go strangely high for me during an episode too.

HELLO, Sorry to here about the problems you had at work but it sounds like you handled it quite well. I am very sensitive to scents and they do cause migraines for me. Perfumes and petroleum are the worst. I understand it is my problem when I go out in public but it really upsets me when a nurse or assistant is wearing a strong scent when I am in a doctors office or hospital. I agree with Kkb1216, the scent of mint can really help.

Go ahead and HOPE!!! My fingers are crossed for you. You may have stumbled onto something that will help you a great deal.

I have had digestion/ weight loss problems as well but not to that degree. I was down to 94 pounds and have fought my way back to 100. The diarrhea sort of resolved itself after many months...oh I did go gluten free! Trust your doctors, hopefully they will find what works for you. I would think they would concentrate more on the weight loss than the hypotension but I am no doctor . I do know that for me gaining some weight back helped a bit with other things like blood pressure, not all of the time but overall. Hang in there! there is nothing easy about this illness but you have the support of the folks on the forum!

When I get hot I get itchy. I wonder too if it is mast cell or autonomic related.

At the beginning I had all those including the bathroom frequency which later changed to the opposite problem. I hope you get a clear diagnosis. I know we are always told not to assume everything is autonomically related. Not certain that is even a word

Thank you for sharing . Happy that you have gotten to the root of your migraines!!

I am looking into this. My understanding from my neurologist is that they have done this for years but not using the imaging which might improve effectiveness. http://www.sciencedaily.com/releases/2015/03/150301092136.htm

I have tried it all!!! I mean all!!! Currently I am trying to reduce pain medications then decide on trying a preventative again. I was thinking of Verapamil but it causes constipation which I DON'T need . Wish I had an answer for you. Tylenol tension is my go too..but want to try to eliminate all caffeine.

At times I will get almost sharp pains in my chest..but at other times it will be more of an uncomfortable heavy feeling. I think that is a bit more disturbing. The location can vary as well. Have you had any tests done or ekg's etc??

Ramakentesh, I have a question about the compensatory response that you mentioned. I understand when I have OI ...I get warm, a bit nauseous, darkening vision, etc...have to lie down fluids etc... however, my most horrible spells begin with weakness, like I am trying to walk through water and a feeling like my body is shutting down. I sort of collapse. When checked at the hospital blood pressure can be quite high. One time during a spell I urinated out tons of water. Can the compensatory response come on very quickly?? It has only happened a few times but very unnerving.

I think there are different types. One type I had placed little suction cups several places on the body and involved little tingling currents. The other was at the Mayo clinic I was dusted with a powder and placed in a hot box. I stayed in as long as I could. Getting close to the amount of time they wanted. Very difficult when heat causes problems for you. In any case they are testing your body's ability to sweat. I had loss of sweating on several parts of my body...called hypo hydrosis. Let me know if you have other questions about the test. Good luck!!!!

I am thinking of you. Being in the hospital can make one feel down...but you are hopefully getting some answers. Let me know if you have any other questions that I can help with or just listen. You can always PM me also. Hugs!

I too have both!!! The Dysphonia started for me when I was around age 33, very young for that. It came on gradually after a flu vaccination. I took botox injections for years as I was a teacher and spoke all the time. At age 50 the autonomic problems began. I had to quit teaching and stopped the botox injections. I have always wondered if the years of botox was my problem?? Or if it was an early sign that I had neurological issues. No one has mentioned any connection except for one doctor who thought both could be mast cell related. Wish I knew!!! I also have small fiber neuropathy and autonomic neuropathy.