New Member

[hsinthecountry]

Hi. Glad to find an active forum for NCS/CFS.

My history: I've been fatigued for much of my adult life. I was a heavy drinker for years (dry since 1997). Was diagnosed first with MVP, then ebstein barr and hashimotos disease. Had thyroid removed and been on synthroid 100mcg for 10+ years. A few years ago I was sitting at my desk on a conference call when BAM -it felt like someone hit me in the back of the neck with a club. I thought i was having a stroke or heart attack.

The onset of fatigue after the event was horrible (several days). At first these were months apart but they became ever more frequent. After years of not knowing what was going on, my doc sent me for tilt table test. I got severly nauseated and passed out after just a few minutes. So now I had a name (ok half a dozen names - NCS/NMH/OI/dysautonomia/hypotention...) for my disorder.

My wife started to notice that at night i would gasp for air and my doctor suggested a sleep study. Found I had sleep apnea. I now use a cpap which has been a mixed blessing. It helps with sleep but the mask is aweful to sleep with.

My cheif complaint has been fatigue and cotton for brains. I am a programmer analyst, so this has had a horrible effect on my performance. I recently started a new job (after 10 years at the previous one) - and the stress has made my symtoms worse. I am active in my church, but feel i can no longer keep this up. I have felt very guilty saying no to more committments and social engagements. I want to have relationships, but have no energy to invest in them. There are days i feel like i cannot cope at all. Doc has prescribed xanax for sleep, and zoloft for NCS and depression.

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Been married for 20 years (the Lord has blessed me with the best wife in the whole world), have 4 kids, 2 beagles, 5 cats, 8 chickens, 2 rabbits

Thanks for a place to vent my thoughts. Peace and blessings to you all.

[Dizzy Dame]

Welcome Dave! I'm sorry you have to be here, but I'm glad you found us. You'll quickly find that we're a supportive and informed group I hope you find many answers here and make many friends.

- Lauren

[MightyMouse]

hi Dave, glad you found our corner of the internet--I'm sure you will find a great deal of information from our members.

I liked your description of cotton for brains--we often refer to it as brain fog, but your version gives me a better image in my cottony brain Nina

[bttrflyamby1981]

Hi Dave,

I'm happy you found "an active forum".

I'm thankful for this forum as well. I have learned so much from everyone!

Good luck and best wishes.

Amber

[MomtoGiuliana]

Welcome! Glad you found the site!

Katherine

[ariella]

Welcome Dave

With you on understanding how being ill has affected relationships/socializing. I've missed weddings (including my own sister's), many many social events (don't know if people understand why I can't "just sit ther"), dinner invitations and the funeral of a dear friend. I often say that this is one of the hardest aspects of being ill.

Wishing you to be able to get this all under control.

Ariella

[Guest dionna]

welcome to the forum. i really hope that you can find some help here.

dionna

[Cheryl]

Dave,

I'm a software engineer, so I have similar problems. It's great to have a sit down job with flexible hours, but the stress and the need for sharp thinking can be a real problem. I have days when I just stare at the screen and have no idea what I'm looking at.

I've been diagnosed recently and I am trying to find a way to manage this well enough to keep working. Right now, I don't quite make it through the day, and my vacation time is about used up.

Good luck, and I hope you find something that works for you.

[futurehope]

Welcome Dave. I hope you get some answers here on this forum. Sorry you have the ailment though.

Dave, Cheryl,

Boy can I relate. I was a computer programmer for years. Once this POTS hit, it would take me so much longer to think and figure out bugs in programs. Also, I was feeling so bad, I wanted to avoid meetings and people.

Unfortunately, I pushed and pushed through it for about 1 year, even going part-time until I knew I could not continue.

Also, I enjoy being around people but now that fatigue is my constant companion, not anymore. At my worst, I don't want to be around anyone because then my over-tired brain would have to function and I just do not feel like thinking or relating to anything.

Anyhow, welcome again. It's great knowing there's a bunch of people on this forum who know what you are talking about.

[AJVDK]

Hello Dave! I just wanted to say welcome!

[mom4cem]

Welcome Dave.

Sorry you had to be here, but glad you found the site. A supportive wife/husband/family/significant other is so important, glad you have that.

[dano2718]

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!

[nadine]

welcome---

It sounds like you have enough to keep you busy at home and just trying to work. Four children and all those loving animals would be all the social engagement I would need-lol.

I am sure that they require all the energy you have. I also have CFS -diagnosed many years ago and NCS, now ?POTS and FM as well.

This has been a great place for info and support.

[hsinthecountry]

Thanks everyone for the warm welcome! Nice to know I've got so many new friends that share the same struggles. I look forward to getting to know you.

Anyone using zoloft for NCS? My doc said that this is suppose to help the NCS and my depression, but it keeps me up at night. Will this go away after awhile?

thanks again everyone

Dave

[MightyMouse]

SSRI's are a common first line treatment for dysautonomias--they are believed to help support the central nervous system, which in turn helps regulate the ANS.

You might want to tell your doc about your sleeplessness. I may matter what time of day you take your zoloft. Some folks report SSRI's taken in the pm are a problem, and others report the reverse. I take my lexapro in the pm, but b/c I had the sleepless issue problem my doc suggested switching to am. Everyone is different.

SSRIs may also help with pain management, although from what I understand, some are better at this than others. My pain doc wanted to swap me onto ...hmmm... can't recall which one; in any event, I declined b/c the last time I went of lexapro, my guts stopped working.

nina

ps. forgot to say that looking over the "what helps" section on the main DINET site tells of SSRI's and other treatments that have been shown to be helpful.

[dano2718]

Anyone using zoloft for NCS? My doc said that this is suppose to help the NCS and my depression, but it keeps me up at night. Will this go away after awhile?

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.

[lalalisa]

Welcome Dave!!

I just wanted to chime in and say that I've been helped a great deal by a SSRI (Paxil CR) and I think they're at least worth a try! It helps keep my anxiety levels low, helps me sleep and helps me to function better in general.

It sounds like you have a lot on your plate right now....take care,

Lisa

[BuddyLeesWife]

Welcome Dave

My husband has NCS and just recently was diagnosed with Sleep Apnea and prescribed a CPAP. Fortunately he has taken to the mask well and we have noticed an improvement in his fatigue level - have you tried a different type of mask or even just the nose-buds (I think that is what they are called)?

He was first started on Zoloft, then switched to Effexor XR which made a huge difference in his symptom management and now they are in the process of switching him to Wellbutrin.