Jump to content

NEW, scared, and so glad to find you!!


tammyokc
 Share

Recommended Posts

Hi all! Thank you all for your concern for each other. I know it's the only way to get through this (well except for faith in God and family). Just to know there are others that truly understand...well there are no words to describe it.

I am 30, almost died of cancer when I was 20, been sick all my life, non-functioning for 3 yrs, and only diagnosed a couple months ago after endless search through doctors and tests...sound familiar!? I white-knuckled work until Jan. and now am home bound and afraid I?ll have to try for disability.

My biggest symptoms are the heart palps (resting heart rate 110-136), anxiety, insomnia, adrenaline rushes, low bp, muscle pain and weakness and uncontrollable itching for years.

I am never tired EVER! I stay in a wired state at all times. My sympathetic nervous system is stuck in fight or flight. It has been for 2.5 years. I feel completely exhausted emotionally, mentally, and physically but if it weren't for Ambien I wouldn't sleep at all. This may sound extreme but it's true. Anyone else have this? I don't know how much longer my heart can beat this fast with no sleep and keep going. I feel like I am dying.

I have tried beta blockers (Inderal, Nadolol, Atenolol), Midodrine, anti-depressants, anti-anxiety, so many other things.

Right now I am trying Midodrine but I am so hyper sensitive to meds. I wonder if 2.5 will even do anything. I always cut my pills down to 1/4 of what is prescribed and I still have awful side effects...does that mean that I won't ever be able to tolerate meds and should just give up and live with this and quit wasting the money? With the Midodrine I feel like my hair is standing straight up with chills and my heart is beating even faster, is that possible with such a low dose? When do you know a drug is not going to work for you?

I know the best thing to do is type things in the search engine and read what has been written and I've done that for months and am so dizzy from it. I guess I just need some reassurance and know that even though I'm new to this site, I've found some good friends that will keep me in their prayers?you guys are definitely in mine!!

I guess I?ve seen so many posts today about some having babies or working and I?m thinking, HOW? Usually I?m so positive, must be depressed today?sorry?ho hum?

tammy in oklahoma city (thanks for helping all of us new to this site!)

Link to comment
Share on other sites

Tammy, have you had a tilt table test? Also, have you been tested for pheochromocytoma (adrenaline producing tumors)? Just curious.

I'm sure there are others like you--you're not the only one here on Ambien! (I'm included in the group). I often have trouble falling and staying asleep despite being exhausted. Unlike you, though, I do get tired.

Midodrine is very short acting, so even if you do have a side effect, it will be completely out of your system in 4 hours. Additionally, that hair-on-end feeling is a normal response to midodrine. If you can tolerate it, it's a sign it's working.

You may want to download a free copy of the NDRF handbook. For links to their site, see the pinned topic "help yourself to answers " section

http://dinet.ipbhost.com/index.php?showtopic=1954

The handbook can be downloaded for free and read using a Adobe Acrobat (free program). It does a nice job of descibing all the disorders. Sounds like you might be in the subgroup with "hyperadrenic" issues.

Welcome to the board and perhaps other will have more info for you. Nina

Link to comment
Share on other sites

Tammy,

I share your pain in that I feel like I haven't been able to relax yet since this illness hit. I do get tired, but only from being constantly keyed up -- I feel like my body is on constant overdrive and I can't turn it off. The only things that have helped me so far are a beta blocker (Toprol XL 50mg), Klonopin (an anti-anxiety drug that you would have to be careful with because it is habit-forming), yoga/meditation, and eating very healthfully (low sugar, limiting refined carbs to almost none, eating plenty of protein and vegetables). I also would recommend taking cod liver oil or some other form of omega-3 fatty acids, since the AMA has endorsed them as being heart-protective, as well as maybe a B-complex supplement. I was told by several of my health care providers that when you're having chronic stress and illness, B vitamins get depleted very quickly. You can have your vitamin levels checked by your doctor with a blood test.

I wish I had some more ideas for you. Getting evaluated by a major medical center (Mayo Clinic, Vanderbilt, Cleveland Clinic are some) is a good idea. These places know a lot about dysautonomia and can perform the right tests for you.

Amy

Link to comment
Share on other sites

Thanks Nina and Amy.

Nina - yes I had a TTT in Feb. 2005. It was positive. Heart rate went from 70 to 165 on first tilt up. Almost passed out after maximum dose of isuprel but didn't. Heart rate went from 140 to 50. I have been all over NDRF and have posted some but just found DINET. It's awesome.

Amy - I am a total health nut. Went sugar free and organic back in Oct. 2002 when heart palps. and anxiety came on. But it was too expensive and I didn't notice any difference so I am back to eating normal. Still use organic milk, farm hormone free eggs, and other basic products and watch my carbs mostly. I take a probiotic, b12 vitamins that melt under your tongue, liquid magnesium, olive leaf extract, and vit. C. Use to take high dollar multi-vitamins but didn't see a difference and again too expensive!

Toprol? What other beta blockers have you tried? And what were your side effects from them?

God bless you too for helping! :)

Link to comment
Share on other sites

Tammy i feel for you.

I constantly feel weired although latley ive been feeling a bit better, my days go from awful to worse to **** then back up a little bit. Just about 5 mins ago i had a Heart Palp that freaked me out, lasted about 30 seconds, they always seem to to freak me out and ive been having them for 2 and a half years. I get Itching, Floaters in my eyes, Muscle Cramps, Pains all over, Tierdness, Weakness, Anxiety, Insomnia, Hear Palps, Stomach pains, Kidney Pains, Back Pains, Panic Attacks, Adrenalin Rushes, The feeling that my heart is slowing down ( which it does, usually when im nervous or feeling nervous or when i stand up ), Low BP and High BP / HR upon standing + more. The one thing ive just noticed is that i got extremley dizzy when i moove my head in a round circle ( roll my head around my shoulders, common stretching manover ). Do you get what i get? Faith in GOD is very important and at present im lacking it, im gonna have a read of the bible to day and learn some more. Stay strong and i will pray for you right now.

Link to comment
Share on other sites

guvna2004, I am lifting you up to our Heavenly Father right now. This tests all of our faith and trust and strength. If it weren't for God and family, then forget it. I find when my faith is low and things seem like they can't get any worse, I have to start thanking God for my many blessings and start claiming my health and thanking Him that it has already come to pass. I thank you Father that my heart and body are in perfect alignment with your will, I thank you that my blood pressure and heart rate are in balance, I thank you that I feel anxious, but I am calm in you. I thank you Lord that even though I don't understand this, you do. Thank you Father for suffering for me and in turn I can suffer for you. Show me the way, give me the strength and endurance for mine is weak...

Thinking of you my friend and praying for your strength today and everyday!!

Link to comment
Share on other sites

I am new to this site, and I find the stories interesting and also concerning, with all the stress people are going through. I can's say that I have a particular diagnosis, but I have an Inderal (propanolol) story that seems to be unique to just me........but if anyone has experienced anything similar, please let me know so I won't feel alone in this.

On Feb. 18th, I started feeling as if I was coming down with a cold or something. Mind you, I received my flu shot this past November, and had high hopes that it would safeguard me from the flu. Well, by the 20th, I was taking aspirin (my 'drug' of choice) alternating with Motrin to keep my temperature around 99. Since I worked the night shift (7 pm to 7:30 am), and knew I might get worse, my son drove me to work. Sure enough, at 10:30 that evening, my temperature was over 101, which disables me all by itself. To get to the point, I took a taxi home at 6 in the morning, and felt all the flu symptoms, except I never had any GI problems.

By Friday that week (I didn't go back to work), I got a ride to my doctor's office to get a note for returning to work. He ordered the Z-Pak antibiotic, told me to resume taking my Zoloft which I had stopped taking over one year ago, and he told me to stop taking the Propanolol that I'd been taking for over 6 years. Like a good patient, I listened to him without asking questions.

By Sunday the 27th, I was laid up on my couch....unable to sleep, no appetite, tremorous, easily startled by any noise, felt like I was wearing the wrong eyeglasses' prescription, my body felt heavy, I couldn't relax my head/neck, and my body felt like I was vibrating. Of course, I was unable to go to work, and wouldn't even THINK of driving a car. I was forcing myself to at least drink fluids. I was lucky if I could get down a bowl of oatmeal in a 24 hour period. I just plain could not function.

On Tuesday, March 1st, I called my son home from work to take me to Emergency. Based on the way I must have appeared, they assumed I was there for a case of 'depression'. I actually told them that I believed I was withdrawing from the propanolol, but no one seemed to take me seriously. They kept me overnight in Telemetry, ( I got NO sleep), did lots of EKG's, gave me some IV fluids, and by the next day I felt much better, and went home that evening.

But things weren't better. Again, I could not sleep, and I again felt like I was withdrawing from not taking the Propanolol. So, Friday morning I was again driven to Emergency. They admitted me to the Mental Health Unit, and I did not care........I just wanted to feel like myself again, even if it meant being diagnosed with 'depression'. I stayed on that unit for 4 nights, the first two nights I could not sleep at all, so they gave me Zyprexa at night to help me sleep. But the interesting thing is, two days into the four-day stay, the Psych. doctor put me back on the propanolol (the generic for Inderal), and I eventually started feeling like my happy, joking self again. I went home Tuesday, March 8th. Guess what new medication they prescribed for me 'to help me sleep"....Zyprexa, which I understand is an anti-psycotic drug.

My big question is this: Has anyone out there felt any withdrawal symptoms from suddenly stopping the Inderal? I know what 'withdrawal' feels like, because I stopped drinking alcohol in 1998, and it felt the same way. (I'm a recovering alcoholic, and proud of my success).

I will be following up with a Psychiatric doctor, to monitor my medications in a few weeks, and I don't plan on continuing the Zyprexa after I see him, because I don't take drugs that I don't need. I am sleeping soundly at night now, and I am continuing my Inderal 10 mg twice or three times a day, and Zoloft 50 mg daily. They prescribed 5 mg of Zyprexa, but I've only been taking half a tab (2.5 mg).

Any similar experiences out there? Or any advice/comments? I'd really appreciate it. Thanks for listening to my long story.

P.S. I was originally prescribed the Zoloft and Inderal when I quit drinking in 1998. The Zoloft was for 'alcoholic-induced depression', and the Inderal was for anxiety and also for tachycardia, which may be similar to symptoms I've seen posted on this site. My mood has always been upbeat, and I have a good sense of humor. So, this experience really stumps me.

Link to comment
Share on other sites

Guest tearose

Hi tammy and welcome "home"! Yes, this is a great place to learn and share and we are glad to have you.

I share the belief in a higher power and it has been the source of grace and strength when I thought the road was too rough to travel anymore! Keep your strong faith and spirit! We will give you gentle non-denominational reminders if you stray! We poetically refer to the walk on the dysautonomia path as the "healing journey". On many levels tammy, you are not alone!

As you get familiar with what your symptoms are and address them with a treatment plan, I think you will see improvement. It is usually a change in our hormones, or a virus or travel or maybe no specific reason you may suddenly experience a flare in weird symptoms! This is normal for us! Just hang on and give new symptoms a chance to either go away or form a pattern. If ever you feel real danger or unable to take care of yourself, naturally go to the doctor.

I think you are wise to read through the archives and glean a lot from there too. You will be better able to understand what any additional testing is all about when/if you go through that phase. I can't address your medicine questions because I am not on any. I am like you though, in that I must cut any meds I do take in half! One regular tylenol can put me to sleep!

You mentioned never feeling tired...just wait a few more years...you may be tired then?

Who knows? I think our bodies try really hard to balance the chaos that is going on inside and just when you think you've figured it out...sometimes...oops, things change and you have to reformulate your treatment plan.

Be resilient, stay proactive and keep a sense of humor!

best regards, tearose

Link to comment
Share on other sites

Guest tearose

Hi Christine!

You are dealing with a lot of mixed things and I sure feel for you!

I would encourage you to work with a top notch internist to start. You need to have a good medical team leader and then build a medical team. Do let the internist know that you want a real good autonomic nervous system workup. Some of the symptoms you describe can be confused with other processes other than dysautonomia so I would ask to be fully diagnosed before beginning a treatment plan!

I am glad to hear that you are so positive. As you know, with any unusual illness comes the frustrating challenge of navigating through the medical maze! While feeling crummy!

Keep reading and keep looking for answers.

Best regards, tearose

Link to comment
Share on other sites

  • 4 years later...

Hi Tammy, I'm just going to give suggestions but I have the same sympathetic overdrive as you, although mine doesn't seem so severe. I hate to give you the same advice you've read elsewhere, but controlling my POTS better has helped my adrenaline surges (not perfectly, though). For me it means wearing waist-high compression all day long, 3+ liters of fluid, 4+ gms of sodium, rest and careful exercise. Mornings are hardest so I plan on lying in bed for the first few hours of the day while I drink salted gatorade.

I couldn't take midodrine because I have alternating pooling and severe vasoconstriction and the midodrine turned my feet and hands cold and blue. Florinef made my BP too high. The next med on my list to try is mestinon. The Mayo doc didn't want to start me on BB's because my high heartrate is actually a healthy attempt by my body to maintain bloodflow to my brain.

I'm sorry you haven't found any relief. Have you been through thorough autonomic testing to try to determine the cause of your POTS? I'm sorry you have to leave your job. It must be such a scary time, especially when your body seems to be so out of control. I still dream about going back to my nursing job, but in reality that won't be happening anytime soon. When my POTS first hit, I had over 40 Dr's appointments and 4 ER visits and was told that I had everything from Purple Toe Syndrome to erythromelalgia to anxiety to V-tach. I was able to finally get some answers at Mayo, and even though I can't work I have a better quality of life since I went. Although, I could have implemented all Mayo's suggestions without having gone all the way to Minnesota, but getting evaluated gave my husband and I peace of mind by ruling out all of the scarier causes of POTS.

I'm sorry you have to be saddled with this unpredictable, difficult to manage illness. I'm glad you have faith in God, who has actually helped my husband and I to grow closer through these past difficult years.

Please let us know how you're doing and post any further questions, Janie

Link to comment
Share on other sites

Hi Tammy,

I have been in the same place you are at as far as the symptoms related to POTS, body being iin overdrive, insomnia, etc. I still am basically recliner bound, as I can't be on my feet more than a few minutes at a time, but have found Atenolol, Klonopin, xanax, B vitimins, and ambien to be a huge blessing. I don't take them everyday, except the atenolol as I worry about having to keep uping the amount if I did and after an awful withdrawl experience from Prozac, I don't want to ever experience that again!!!!

Clonidine you may want to ask you doctor about.

- Tammy

Link to comment
Share on other sites

before folks put TOO much time/ energy into replying to the original post & initial follow-up questions (as opposed to the most recent follow-ups) people might want to keep in mind that the post was first started in 2005, aka FOUR years ago. so regardless of whether or not the people are still active on the forum what was a pressing issue back then isn't likely to be the exact same now. just don't want people to be disappointed with lack of replies, etc.

there have been a few posts that are years old bumped up recently via recent replies. it's allowed of course & can bring some good discussions to the surface at times but in general it's something to pay attention to b/c it can have an effect on how/ what one might reply to, i.e. someone who was new 4 yrs ago obviously isn't new now, etc.

cheers,

B) melissa

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...