angelloz

I too have elevated serotonin levels..plan to ask my neuro about that this week. I did get serotonin syndrome once because of triptans so only take about 4 a month now . I too struggle from horrible migraines that last for days on end....my worst quality of life symptom.

What do you find is most helpful as far as your pain meds go. Only if you don't mind sharing. I only seem to tolerate tylenol.

I tend to feel better with tylenol as well, I take it to try to ward off migraines before I go to other meds which bother me quite a bit. I have read that for some reason they have found that tylenol helps with depression. I do not take more than one dose daily. ( 2 caps ).

Hello, Just returned from the Mayo Clinic in October and so far 3 of the tests I had done have been denied by my insurance as being experimental. I never had problems before so now I realize why. I am going through the appeal process. I wish the people making these decisions could spend one day in my shoes.

Do you feel especially warm, or just uncomfortable??? I can feel off right after I lie down but not exactly what you describe. I often get very hot.

Even though I am heat sensitive the summer months are better for me. Not certain why as my blood vessels bulge but overall I feel much better.

Exactly, I have thought it strange that I don't feel thirsy. I too can just sort of force it down. Once in a great while when I have had a fair day and stay up a bit late, I will get really thirsty before bed..almost like something has kicked back in and working..then by morning back to the same old. I don't drink other liquids much due to migraine triggers..artificial sweetners, flavors etc.. but if you can I think it would help you to mix it up! Even squeeze a little lemon in your water..sometimes I do 1/3 cup pear juice with water. Good luck!

I am doing this same thing today, we need to find a way to stop this!!! I wouldn't blame anyone else for this..and I don't feel like anyone blames me, it's just that I know all my problems place a damper on the events and joys of my family and for this I feel so terrible and yes guilty!

I will try to balance my electrolytes more! I can't do the drinks due to artificial flavore and sweetners but I will try a home blend. Thank you so much for this tip!!! I am thinking about blackstrap molasses.

Thanks to all, Great points and all things I have considered! Whenever I increase my salt intake or take florinef I get severe migraines! A constant issue for me starting long before my autonomic problems. Yes, I have tried EVERYTHING for migraines! I start vomiting can't eat etc....with migraines that last 3-5 days, which defeats the fluid benefit. I have long realized that what makes my body feel better increases the migraine issue so I am stuck between a rock and a hard place. Can't function with a migraine and at least when my body is struggling I am not in severe pain. I doubt a doctor would agree to try a transfusion in any case, but I will ask my question about it when I go to the Mayo in October. Grasping at straws I guess, just want some " life " to my life!

My thinking is that blood is so much more than water and saline. Does anyone know if a blood transfusion has ever been tried for those with low blood volume? Might our bodies hold on to that better than water/saline alone? Could there be some other benefit??? i just want to try something that is not a medication that makes me feel worse.

Fair questions! But since you are asking these questions it shows you are hoping for answers. Without going into details I am in a similar situation. Some days are somewhat better than others. Do you have any days that are better than others? As you pointed out research occurs daily so there may be a new treatment on the horizon. Is there anything that you enjoy? Even a bit??? It is interesting because there are still things I think I should enjoy or look forward to I just don't feel the same joy. This is leading me to wonder if the feeling stem from physical issues that could be treated with medication. Have you tried anything in that arena? Do you feel worse than at the beginning?? Has anything improved?? Do you believe that your body could heal somewhat even if the odds are against it. I remember reading the Last Lecture, and Randy Pauch seems about as logical as anyone I know. He said , I keep hoping that I am the one in a million person that beats this illness because even if I am not , it is a better mindset to live each day. ( no quotations as this is not exact ). This makes me think that a logical person can still be very optimistic. I think this is where I fall short, I am not a naturally optimistic person so I think it would help me to work on this area. That is my two cents.

Wish I had the answers you are seeking. Lifting is a huge problem for me as well. Is it because of lack of constriction, my blood vessels bulge. MCAD, I have been diagnosed with that but the antihistimines do not help me. Do you ever have times where it is not as bothersome?? Arms above my head house cleaning can have the same effect. I go to the Mayo in October, armed with a million questions. I will bring this up as well as many other issues. First and formost for me is constant severe head pain, migraines and skullpain and pressure really ruins my quality of life! Sorry for whining and getting off topic!

Interesting topic for me too...in my past I would always get shakey when I became too hungry. Since I have had pots I don't get this hungry need to eat feeling anymore but I have had periods of shaking and weakness...so I wonder if I just am not picking up on this anymore. I have lost so much weight and eat constantly now just to maintain so perhaps I reall am rarely hungry. Another strange thing..once in awhile I'll get really hungry during the night...while I don't feel this during the day. Mysteries...

54..things started at age 51

Caffine makes mine worse. Oddly some days are just far worse than others and I cannot pin point why!

I stack up some pillows and rest it at about heart level. Sometimes...well quite a bit actually, it just errors out when I am standing....that may be a pulse pressure rather than a blood pressure issue.

That is a tough one isn't it. Like you my GP is great, tries to keep all my tests etc. in one location, but admits it's way out of her realm. I have currently been to the Mayo Clinic and return in October. I hope if I can just pin my diagnosis down a bit better than my GP can work with me and maybe through a doctor there. Like someone else mentioned , I wish you could go one place..like the Mayo and they would admit you for a week or so to do everything needed at once to figure things out and really get to the bottom of some issues...try some meds while you are there incase something goes awry...etc... that doesn't happen so we are left piecing things together. .

Ok Alex, thank you for posting and I have a question. I am admittedly having a problem understanding the bottom line. Which is best water or water with salt?? I believe I have problems balancing my electrolites.

First off..how quickly my body can " go bad", I can be having a pretty normal day then something happens and I am weak, heart slammimg, trembling...yuck Odd feeling inside my head..snap , crackle, pop gritty , grating...alsways some pressure or pain Vision is off in a way I can't explain..sometimes looking at things makes me want to close my eyes..sort of uncomfortable.

I have had this too...the way you describe it! I can only read a page or two to my granddaughter. I have had a conversation where I had to excuse myself and leave. Felt like I was slipping away. Takes a long time to recover. sometimes it's a bit better. Hang in there! You are not alone!

Sarah, I forgot one thing that did help. Before bed I had to basically sit for an hour and not MOVE.... not even watch TV....I would have my husband rub my back lightly. I would sometimes be able to sleep for a bit. It seemed the more I moved around the more wound up I became...

Ok , I am the person you can relate to! I have not been diagnosed with hyper pots, just autonomic dysfunction. One of my many first and oddest symptoms was never feeling tird even though prior to onset I was a 9 hour a night sleeper. Like you I couldn't figure out why I wasn't absolutely exhausted. Yet energy remained without sleep. At first hyper-thyroid or pheo was suspected but these did not check out. Melatonin was bad for me as well. Anything that works a bit...ativan etc.. caused BP drop and my BP is already too low. I am now 4 years in to this illness and am beginning to sleep a bit better. Maybe my body is finally wearing out, not certain. No answers but I too have read all the discussions on fatigue and wondered why I am the opposite. I have hypovolemia also, diagnosed at the Cleveland Clinic...you would think that would make me tired as well. Sorry no real advice...maybe just sharing will lead to insights.

I had a doctor tell me once that the nitro proves or disproves nothing. A certain amount of normal people have a profound reaction to it. I will never allow that test again. I have had two other tilts without nitro!

I went to the Mayo in Minn. a few weeks ago to see an immunologist. He referred me on to neurology so I go back in October. While I was there they did some autonomic testing. I am 54 years old. Don't know if that helps or not. I constantly struggle with weight loss and my blood pressure. Pm me with any questions about my visit if you want to.