dano2718

Hi Daniel - You bring up an interesting relationship between physical activity and the insomnia. Ten years ago, when I was 22 I first experienced prolonged insomnia. It was during a bicycle tour where we would ride about 100 km a day, usually done by lunch time. I had insomnia the whole week despite getting 4-5 hours of sleep a night. It got better after that week. In the last few years I go through periods of insomnia regularly, but for the last 3 weeks or more I've been really helped by Lunesta for sleeping. Who knows if it will keep working or if I develop tolerance to it? You are doing the right thing by taking small steps, and I really think that you can hold on to the hope that you will have periods of time where you are doing much better. That is the case for many of us, though it doesn't go away.

{ I just read your earlier post and now edited this post since you give more information there.] First of all, as I can attest, quitting psychiatric drugs does create some really rough withdrawals, but it will get better in time. I understand how difficult it can feel. It's tough to go through this and feel like you are loosing it, but the body is a very adaptive thing. You are young and that works in your favor for recovery. You sound very distraught, and so my advice is to not try to solve everything at once. Think about the one symptom that is causing you the most trouble, maybe insomnia in your case, and work on that. Maybe you can get some sleep medication that will let you get some rest. Think of it as building blocks - you get the sleep under control and you have more strength and less stress so you can work on the next symptom. If you try to solve this all at once trying to get the right medicine that cures everything you WILL stress yourself out and make yourself worse. I can't emphasize that enough! Make yourself do things to relax and strengthen your body, maybe to meditate, do some exercise as you are able, and slowly work on the most troubling symptoms.

I tried Trazadone years ago for the insomnia. It helped my sleep, but like many people, it left me very groggy the next day. The newer drugs (Ambien, Lunesta) have a much shorter half life and don't seem to leave patients as groggy the next day. So far Lunesta has been very helpful for me.

April - I was on Effexor back in college along with a few other psychiatric meds - which was totally inappropriate for my condition. I got hypomanic from these drugs, which was scary not feeling in control of my old self. For those reasons I quit them all cold turkey. I think most of the worst symptoms were due to Effexor withdrawal - the so called "brain zaps" and feeling like I lost my mind. Had to beg my profs for an incomplete that quarter and just took two months of just going through withdrawal. It got better, but I felt used, angry at the doctors and big pharma. I know what it's like to hope that the right medicine will do the trick, and I am still looking. With psychiatric meds, though, my position is now 'fool me once, shame on you...' Others may do fine on these drugs, but not me.

Hi Willow - Glad to offer my experience as a data point. I was reading about this sweating and found that it is thought that menopause and the reduced estrogen is thought to cause the hot flashes by somehow raising norepinephrine levels in the hypothalamus, which regulates temperature control. So it may be a little of both -- too much NE due to dysautonomia and also due to menopause. Your GP may just write it off as just menopause, but trust your instinct as to whether your symptoms are atypical of other women going through this change. Isn't HRT is supposed to help control these hot flashes? Maybe it's the dysautonomia...

Susie - I can only tell you to just be as gentle on yourself as possible during this time. It can be really rough for a while, but over time, it will get better. The Docs may not tell you about this side of psychiatric drugs up front and act like your withdrawaly symptoms are very unusual. It's the drugs. I stopped cold turkey 9 years ago and had to just accept the very freaky symptoms. It got slowly better over the next three months and I began to feel more normal. You may want to taper down your dosages very very slowly instead of cold turkey - probably a safer approach. If I can offer you some hope, surviving the withdrawal is very good feeling once you have come through it. If that's what your body is telling you to do, you really can do it! Just keep your Dr in the loop. Best wishes Cymbalta and Effexor usually have the worst withdrawal symptoms, more so than SSRI's like Lexapro.

I just thought I'd say, yep, I get this too. I'm also a guy, so I don't think it's got anything to do with the big change. For me, it can be when I lay down in the afternoons, evenings, or when I sleep. I often wake up the next morning still damp all over - usually after a night of insomnia or very light sleep. Maybe it's a hyper-adrenergic thing. Glad to find others are noticing the same thing.

Warning, this may be more of a personal rant, but I have not had good experiences with antidepressants, too many psychiatric side effects and not much help. I am not convinced they regulate the nerves, which implies a homeostasis mechanism - they only increase serotonin in the nerve receptor in a dose dependent amount. Take too much and you get symptoms of hypomania (anxiety, innapropriate laughter, insomnia). I never could get it right with Anti-D's, but Provigil so far has helped my alertness and concentration without the psychiatric side effects. Each person finds what works for them, so you may find that you get to tolerate zoloft well after a while- Give it several weeks.

Rhonda - Still investigating my fatigue condition, but my POTS was first discovered on a TTT, not by excessive orthostatic symptoms. I think mainly now, I have an inherited neuro (muscular ?) issue I got from my dad - who said he passed the TTT just fine. I suspect I should be getting more muscle weakness and wasting if I progress as he has.

Hi Dave - Welcome to the forum! I'm sorry you've got these issues to deal with. I can see you've got a positive attitude, which is a great asset in dealing with these kinds of disorders. I don't have the same acute onset as you, but I am also a software weenie (embedded SW test)! I started trying Provigil last week and has been very very helpful on the job. I'm not sure about using it long term, but I finally had the energy and concentration (less brain fog) to get caught up on some work projects. May be an option for you. Best wishes!

As a guy with POTS, I can concur that the fatigue does get in the way of having the energy to feel like you are contributing to a good relationship. My last one ended after I started getting symptomatic with this. You just have to realize that she has a lot less energy to withdraw from her bank account. So first priority becomes keeping her employment (which uses up a lot), then health is right up there. What energy is left, is available for friends and romance. It may not be enough for you, but if she is spending what discretionary energy she has with you, when she has it, she's probably doing her best to make it work. Hang in there!

I've noticed this, but you're are right to call it low grade fever. It's just above 100 when docs call it a real fever, even then they aren't too concerned unless it's over 103. I wouldn't pursue it much the Dr, except to mention your perception of temperature disregulation. My temp fluctuates at times, 97 - 100, rarely up to 101. It doesn't always correlate with my perception of a fever - i.e. can feel like running a fever at 97, or chills at 100. I was in bed sweating again with insomnia last night and it felt like a fever, but came out 97.6 - quite normal . Chalk it up to dysautonomia with all the other non-specific ANS symptoms

Alexa - that's great, and I hope that your progress is steady in the right direction. I am quite impressed by your positive attitude under adversity that seems so unfair for someone your age. One thing positive about dealing with chronic illness, for me, is a depth of character and real empathy for human suffering. I'm sure you'll make a wonderful psychologist! Best wishes in your path

Hey everyone - this discussion has been great - and thanks to insomnia, I have time to read some posts before I try to slug through my day at work ! I've spent the last two years trying to figure this out with Dr.s laughing at me and making all kinds of "somatic" diagnoses (it happens to guys too). I knew something was wrong with my dad and I knew I inherited the same progressive symptoms. In the last 24 hours I've finally started to see a general unifying explanation for these odd and disconnected symptoms. I can really see how patients in our shoes can be confronted with difficult choices such as spinal or chiari surgery. I cant fault anyone given how frustrating and chronic this is. It just really chaps my hide to see the medical community tell people they've got a somatic disorder, just work on sleep hygiene and take anti-depressants and you'll get over it - while not researching more about the role of the spine. Thank you all for your thoughts and experiences in this thread.

MightyMouse - As a newbie, I really appreciate your post - I figured this may have been discussed before but couldn't find it in the new message board. It's good to hear from someone who has experience in this. I think it still is a part of the puzzle, but naturally I may be overly enthusiastic to hope that there is a "cure".

Just to preface, this may be controversial to the medical system now, which is appropriate because it is new and not entirely well understood, but I can't help but wonder if this doctor is on to something... I was thinking about the commonality between my father's chronic fatigue later turning into muscle aches in the neck, shoulders and upper back. We both have osteoporosis (and I'm only 32 years old!) and my fatigue / POTS has been turning into muscle aches in the same areas. I am seeing some overlap in symptoms with POTS, EDS, Chronic Fatigue, Fibromyalgia. There's a surgeon who believes that some patients who actually have compression of the spinal cord in the cervical (neck) area may be misdiagnosed with having POTS, CFS, and Fibro. The surgery he performs has helped 88% of his patients: http://www.pressenter.com/%7Ewacma/wallstreet.htm It seems almost obvious, in a simplistic way, that symptoms of autonomic disregulation that don't progress to autonomic failure could be caused by a chronic mechanical insult to the spinal cord. I don't mean to tell anyone to go out and get a surgery done which could be risky and unsuccesful, but I would like to see POTS investigators to look at further research and validation of such a hypothesis. Does anyone else suspect this may be related?

Tried Cymbalta recently against my better judgement. One pill got me quite manic - something I hadn't felt since quitting Effexor years ago. Cymbalta is GSK's version of Effexor. I hope not to alarm anyone, but many people (including me) had TERRIBLE withdrawal symptoms for months after quitting these drugs. Maybe others dont, but you can see what some have gone through on this discussion board: http://www.socialaudit.org.uk/_disc/cgi-bin/discus.pl

I've seen the same thing - when my HR change is up around 50 beats, is when I'm most fatigued / foggy. I've felt a lot better lately and my orthostatic change is down to around 28 - 30. It's good to see some objective correlation with how I feel to know I'm not entirely crazy

Radha - You may want to read the NDRF Handbook - it's a great overview of the autonomic nervous system in dysautonomia - it explains all the neurotransmitters. You can download a free PDF copy at: http://www.ndrf.org/Reference.htm Basically, no, each of the chemicals is different and plays a different (sometimes similar) role in different parts of the body.

Hey there BGSU - I'm soon to be 33 yo male as well. I'm curious about your hyperadrenergic attacks. I used to be very athletic. Now trying some experiments with exercise v/ no exercise. Do you think these attacks are worse when not exercising? I seem to get them more acutely in the winter when I don't get as much exercise. Usually in the evening or during sleep - sweating, pounding heart (not quite tachycardia, but a significant delta), agitated. Not sure what your "hyper" attacks are like, but curious.

I was just curious if anyone else has had their NK Cell activity measured. I had it done at a CFS clinic and it came back low- 9 LU (normal range 20 - 50 LU). It doesn't seem to be specific to any one disease, but is coincidental with other diseases. I think I read somewhere that hyperadrenergic states may supress normal NK Cell activity. Anyone else? TIA!

1. Name: Dan 2. Age: 32 3. Dx: POTS 4. Age at dx. : 31 5. Where you live: AL 6. Symptoms at worst: FATIGUE, brain fog, near syncope, constipation, low appetite, night sweating, nocturnal dyspnea and hypotension, palpitations, excessive sweating, weight loss, muscle aches, insomnia 7. Symptoms at best: Feel almost great... for a while! 8. Medications/treatments, etc. that didn't work for you: anti-depressants (make me manic, feel wierd) 9. Medications/treatments, etc., that do work for you: regular exercise

I noticed that you mentioned "trying exercise" for treatment. I'm still figuring out my situation regarding POTS - I get lightheaded but never any syncope. One thing that really surprised me is my heart rate delta has gone from consistently around 50 BPM (with a systolic BP delta sometimes around -20, -30 mmHg) down to 28 BPM over the last few weeks since doing about 2-3 hrs exercise a week. Fatigue has ameliorated too (which I already knew it would but had forgotten again!). ...Still learning.

Hello everyone - I'm a new guy here. I guess I've always noted some orthostatic intolerance, but I had my first confirmation of POTS when I went to a CFS clinic because of some pretty bad fatigue. As long as I don't stand still for too long, I can stay standing unless I'm really beat. The CFS doctor said I wasn't fatigued enough to have CFS - and plus there was no precipitating infection, just a gradual progression. The thing I've noticed for the past three years is I start getting all my other "syndrome" symptoms (below) in early fall and it is the worst around January. By March, I slowly start to feel better - less fatigue. By this time each year, I feel almost healthy. I suspect by Labor day I'll start heading downhill again . I'm headed to Vandy in October to see Dr. Baggioni so I'm curious to see if I can get some answers. Does anyone else have a pattern like this? Maybe I should try a light box. Glad to be here!