Dysautonomia Advice Please - Scary Rapid Weight Loss & Insomnia

[Mikey69]

Hi all,

i'm Mike. I'm new to this forum. I hope you are all as well as you can be :-)

I hope you don't all mind but i am looking for advice, and i guess some reassurance?

I am a 45 year old male. i've had severe Fibromyalgia since childhood and severe CFS/ME since my early 20's. I've always tried to get on with my life and made the most of it, without worrying too much about my health.

I recently self-diagnosed Dysautonomia, based off my symptoms, lots of internet research and a recent visit to a specialist neurological centre.

18 months ago i started to get new symptoms, which weren't typical for me FMS/CFS. Crazy changes in consciousness, like i'd taken recreational drugs and got a bad hit? (I've never done this so don't really know), vertigo type symptoms, but not vertigo, the worst IBS-D i have ever experienced, unbelievable pain, diarrhea (5-6 times daily), wind, etc. This started mildly and infrequently, but became daily. About 6 months ago i started getting what seemed like hypoglyceamic crashes: sudden weakness, diziness, light headed, shaky, confused, overheating/sweaty, etc. I am now having to eat 6 meals per day. i can't go more than 3 hours without eating. This is weird as i have been able to miss the occasional meal in the past with no problems. This problem has settled by eating more frequently, but it still happens if i am late with a meal.

Also, my heart control became more erratic over past 18 months. I'm used to palpitations with CFS/FMS, but this is different. There are times my heart is overworking, pumping too hard and quicker - even at rest. Moving around home can cause severe palpitations. it's as if there are 3 controls for my heart which someone is playing with - loudness, speed, power. This has stopped me sleeping at night recentl, as my heart is beating too loud/fast. I sleep as soon as my heart quietens (usually 5am).

i have most of the other symptoms associated with Dysautonomia.

At beginning June this year four things happened at the same time: My IBS suddenly settled down within 4 days. i did start drinking milk kefir, and this is the only explanation i can think of to explain sudden change. My bowel habits are normal for 1st time in a decade! (sorry). Also, much of typical CFS/FMS pains suddenly subsided a lot - again, it's been a long time! So some real positivies here.

I suddenly developed severe insomnia, which i am still struggling with. i am getting between 1.5 hrs. - 6hrs. sleep per night. I'm doing all i can to help myself, but i'm still not sleeping well. obviously this ismaking my CFS/FMS/Dysautonomia symptoms worse - i'm stuck in a vicious cycle i can't break.

Sudden unexplained rapid weight loss began at same time. I've always struggled to keep to a healthy weight. Finding it easier to gain than lose. Weight loss is really shocking. I've been losing 2lbs overnight at times. I'm currently seriously over eating to try to maintain my weight, 3200 - 3600 cals daily. I usually maintain on 2600 cals daily.

Once my IBS settled i was left with pround muscle eakness and little stamina in arms and thighs. legs feel as though i've worked out at gym and then ran down a long flight of stairs - weakened, shaky, achy, etc. it's like i've overworked muscles, even though i haven't. This has improved in past month, but i'm still not good.

I should perhaps point out that before all this began i could exercise daily if i was careful. Cycling at home/fast walking on good days. Now i'm struggling to walk most days.

i'm not on any meds, because nothing helps, so no point, I use mediation/relaxation, breathing techniques, CBT, etc.

Sorry for the long post - i wanted to be sure i got it all in,

For the first time in my life i have been (and i guess still am a little) scared and unsettled by what is happening to me. This alone is alien to me, as i have always just dealt with it. i've had test after test, and all have come back fine. Thyroid, kidney, liver, bloods, endoscopy, barium swallow, cardiac/lung tests, etc. I'm bacially very healthy for my age according to all tests, but i'm really a mess! Both me and partner were concerned something serious had been missed like cancer or something. The whole 'what if' i guess? It got so bad i'm even sorting out my will, just in case.

What i want to ask is does this happen to others? i have just started researching Dysautonomia and i have found occasional references to insomnia and unexplained weight loss/gain.

i would appreciate any feedback anyone could provide. Confirmation that this can happen would be reassuring and any tips to help me overcome these difficulties would be most appreciated,

Thanks in advance,

Mike

[Katybug]

Hi Mike,

The unexplained weight loss is a problem many people with dysautonomia experience. I initially had weight loss. Then I experienced a lot of weight gain attributed to several meds I was on but I always wonder if it was the meds or something else. The weight loss was due to the severe GI issues I experienced. Food didn't stay in me long one way or another.

We have discovered I have MCAS (mast cell activation syndrome) and that has been the underlying cause of my GI issues. We are still working on sorting this out. MCAS is a a syndrome sometimes found comorbidly with dysautonomia.

I have to get some errands done now but will try to find some links to past threads on this topic for you.

Talk to you later,

Katie

[p8d]

Hi Mike,

You have described my symptoms almost exactly but mine started after a virus and progressively got worse. You are not alone. I am on TPN at night after losing so much weight. I use meal replacement drinks, eat every 2 hours and take xanax for the shaky/anxiety/doom. I hate taking it but it helps. I also take sleeping pills because I feel worse when I don't sleep well. I take salt capsules, fludricortisone, Gabepentin(stomach pain) CFS supplements and drink liters of fluids daily. I ride a stationary bike 3 times per week and do strength training 2. I became deconditioned and it got severe after the stomach pain/diarrhea. Get to a dysautonomia specialist and gastroenterologist familiar with it asap. I ended up weighing 84 pounds and in the hospital. Yes, it is scary but if you can walk and the diarrhea is gone that's great, keep it up but find a specialist.

[statesof]

Hey Mike, just wanted to chip in as well. Dysautonomia can cause a lot of the tired/ exhaustion, and brain fog symptoms. GI symptoms are aslo quite common, as is trouble exercising. I have personally found that my sleep cycle is a bit more tempermental, which can lead to even more cognitive issues during the day. And the way dysautonomia makes you feel phsyically and cognitively can be pretty scary at times.

Do you have a doctor who specializes in CFS? From what I understand there can be flareups with that particular condition. It might be good to see a doctor, possibly a neurologist or specialist, who can help you to figure out which of your newer symptoms may be linked to your CFS, or to test if you also have an autonomic nervous system disorder as well. And a GI doctor may be able to help you find what is causing your digestion and weightloss troubles.

[angelloz]

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!!

[Katybug]

Here are some of the past threads on weight loss. There are many so I tried to pick out a few that were directly about weight loss. If you want to read more of them, type "weight loss" in the search box in the upper right corner of this page and make sure to choose "Forums" from the drop down list in the search box. Then click the search icon. It will pull up a list. Hope this is helpful.

http://forums.dinet.org/index.php?/topic/24758-unexplained-weight-loss/?hl=%2Bweight+%2Bloss

http://forums.dinet.org/index.php?/topic/25022-weight-loss/?hl=%2Bweight+%2Bloss

http://forums.dinet.org/index.php?/topic/25260-ever-decreasing-appetite-and-increasing-nausea-help/?hl=%2Bweight+%2Bloss#entry235598

http://forums.dinet.org/index.php?/topic/26654-weight-loss/?hl=%2Bweight+%2Bloss

[Mikey69]

Hi p8d, Kateybug, Statesof, Angelloz,

It is a great pleasure to meet you all.

Please forgive my composing a 'joint' message to you all. I hope you are ok with this? It's just easier at the moment, as i am having a bad day (again) ****! this is annoying! lol!

I am very sorry to know that you have all gone/are going through this - it feels like **** on Earth at the moment! I have nothing but repect for you all for continuing to fight the battles against your bodies. Your inner strengths are a credit to you all.

I am also moved that you have found the strength to take the time to reply to me. I am truly grateful to you all. So thank you :-)

When i was in my early 20's and first got CFS i literally couldn't walk for 2 years. I was told i would probably never walk again - i proved everyone wrong. it was a long battle, but i won. And i've achieved so much since those dark days. i never thought i would have to go through such dark times again. I'm sure the sleep dep is affecting my judgement a little, but i can honestly say that this is harder to deal with than re-learning to walk. At least i had some control over that.

I'm on day 31 with hardly any sleep and am continuing to ram nutrients down in order to slow/stop the weird unexplained and unwanted weight loss.

I'm pleased to say that i'm pretty relaxed about it all now. i was fraught on day 4 with no sleep, but i have come to realize that i just have to accept it and hope that it sorts itself out with good sleep hygeine, etc. Although i must admit that i find the weight loss thing quite scary at the moment. I have a very good cyclists physique that has taken me years to develop and i don't want to lose it. (Bumpy legs of steell! haha!)

i presume others have found that the insomnia and weight loss occur at the same time? i don't have IBS-D symptoms at moment, so i'm struggling to wrap my poor tired brain around what the **** my body is doing with the 3,700+ daily calories i am consuming to try to slow weight loss? I should be piling the weight on, especially given that i am now struggling to be physically active. Does anyone know?

Also, can anyone tell me what triggers the insomnia? Or is this another medical mystery? it seems odd that the insomnia, weakness and weight loss all started during the same week. Just what the **** is my craaaazy body trying to do to itself now? it's so **** naughty! I will regain control dammmit! haha!

I'm guessing there is no time scale for this thing? So, in theory it could be days, weeks, months, perhaps even years?, etc.

I've been researching sleep/insomnia lots and i understand that insomnia can resolve within 6 - 8 weeks with good sleep hygiene - is that what you all have found?

I'm not on any meds at mo because sleeping tabs didn't help too much, but the side effects were horrific - so too many costs for too little benefit. I am taking Ataraz 20mg at night, which can help, but again, not as beneficial as i would have liked. I think i need elephant tranquilizers! haha! I'm also trying valerian, hops, passionflower to aid sleep - not sure it works though. Can anyone tell me what they do to aid sleep. Any advice would be most appreciated.

Thanks again,

Mike

[angelloz]

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.

[Katybug]

Hi Mike,

I'm glad you are finding good support here.

My sleep issues are separate from my GI and weight issues. Good sleep hygiene helps but not like it should. I also find I need something like music or the TV on to calm my brain in order to fall asleep. (I know that's not good sleep hygiene but, oh well.) I have to listen to movies or music I am very familiar with so my brain doesn't try to "follow the new plot". I've seen the Harry Potter series hundreds of times because I let one of the movies play so I can fall asleep and use the sleep timer on my TV to turn it off. I get in bed between 10-11 but I won't fall asleep until between 1-5. One thing that sometimes helps me is taking a Tylenol pm to settle my pain levels and any nausea or rashes I am experiencing (all of which seem to like to flare at bedtime. )

There is a known issue with POTS patients and sleeping. There was a paper published on it in Feb 2014. It's called Alpha Delta sleep syndrome. There is not any specific treatment for it that I know off.

If you aren't having any vomiting or diarrhea, have you considered talking to a GI doc about determining if you have absorbtion issues? Just like many other symptoms, the weight loss/gain and/or GI issues with POTS patients seem to have different etiologies. For example, mine seem to be directly related to mast cell activation syndrome and food sensitivity. Others have gastroparesis, still other have rapid gastric emptying.

Hang in there,

Katie

[db2504]

Hi Mikey69. Sorry to hear about ur issues. Yes dysautonomia is very troublesome. My daughter is suffering with a lot of issues and insomnia is one of them. She takes liquid benadryl to go to sleep. It has helped and half the required dose for an adult does the trick. Hope it helps

[statesof]

Hey Mike, for me the sleep issues are always a bit of a battle, I found that typically it will take me anywhere from 30 minutes to 2 hours to fall asleep each night. This has been the norm for me for years. Things like overworrying or putting too much attention toward the fact that your not falling asleep quickly always seems to exacerbate it for me personally. The only thing that has helped my sleep cycle has been to start waking up earlier, so I used to wake up around 9:30 - 11:00 am, and now I have an alarm set for 8:00 am. I'm actually getting less sleep than before and I'm more tired the first half hour I wake up, but overall I sleep more soundly and feel better throughout the day oddly enough. If I'm sleeping more than 9 hours a day I actually feel worse.

As for your GI issues, it might be good to try and see a gastroenterologist just to make sure there is nothing else going on with your weight loss; it is always good to rule things out.