Recently Diagnosed And Having Lots Of Trouble

[jnew]

Hi,

I'm 55, soon to be 56 and have been diagnosed with POTS. I am still reeling. I am very confused and in double trouble.

I was put on a benzodiazapine by an ignorant Dr. for restless legs syndrome 13 yrs ago. I had RLS most of my life, but a new Dr. decided to put me on it. I had no idea how addictive they were until I attempted to get off. The hardest drug in the world to get off of I'm told. Anyway, I was tapering for 2 yrs and doing well...ballroom dancing, political campaigning, and community work. I was very active and felt good.

The first thing that happened was in June of 2010, I was almost off of the benzos, when after a dance class with my granddaughter, we went to lunch and I felt fine. I got up from the table and it felt as though my legs were made of lead and they did not want to go where I wanted them to. I spent the next 6 months having MRI's and many tests. I was told nothing could be found wrong, even at the Cleveland Clinic. I managed to keep busy, but my balance was off and I fell a couple of times. I had no tachycardia or bottoming out blood pressure. In Dec we went to Jamaica with friends and I was in the sun and hot tubs without any bigger problem other than the heavy legs and balance issues.

I was getting very anxious as time went on and decided to go to a detox center in Mar of 2011 to get off of the benzo. I had a reaction to Dilantin, and ended up in the ER. I was weak and dehydrated and they put me back on benzos. I made it back to Ohio, home. I was very shaky and the low dose benzo didn't work well any longer. They then changed me to valium. I started having panic attacks and sometime during the early Summer, noticed my pulse was flying when I stood. I took my BP and was shocked how low it was. My GP and 2 cardiologists blew me off. I went to the Cleveland Clinic again in Aug to a cardiologist. Well, you know all of the tests that were ordered. I was told I have severe POTS with severe {40%} pooling.

I am like I am drunk 24/7, I cannot stand more than 10 minutes and I cannot drive or shop at the store. I have spent the last 8 months almost entirely in my house. The worst thing is this rocking/bobbing feeling I have 24/7 as if I were on a raft on the ocean. It is maddening. I miss my granddaughter so much. I cry constantly. I don't know how to come to terms with this.

I went to see Beverly, Dr. Grubb's asistant a few weeks ago. I make myself exercise but I feel I am getting worse. I could go for walks holding my husband's hand a couple of months ago and went to a movie the first of July. I didn't see the reddness in my legs like now.

I have to get off of the benzos...again...because they think valium might be making it worse. I keep looking for a cause.

Last night, out of nowhere I awokw with my pulse at 110 and the rocking/bobbing going crazy. Does anyone else have this feeling?

I am sorry to go on. It's just that no one else gets it. They think I should be able to will my way through this but I can't. I feel so overwhelmed by the benzo problem and now POTS. I feel hopeless along with all of the other POTS symptoms and don't know how to make it through the Holidays.

Thanks for listening. I appreciate any feedback..

[issie]

It could be the valium making things worse for you. It will take awhile to get off that because you must taper off. That alone could make you have that dizzy, wavey feeling. Not to mention the low blood pressures, are you using compression hose to keep your pressure up? That will probably help the pooling in your legs. Do you know which subset type of POTS you have. That is really important in order to know how to treat you.

So sorry you are having to deal with this. I'm in my 50's too but have been dealing with it most of my life. It's allot harder on people when they have always been pretty healthy and then get sick. It's more of a shock to the system. You have started on a journey of much education. Get ready to learn a whole lot that you never knew. It is actually very fascinating and putting the pieces of the puzzle together - is very rewarding.

Hang In There! It takes time, for you and others to adjust that your life situation has changed. Try to not dwell on the negatives but focus on what you CAN do not what you used to could do or want to do. It makes it more bearable that way. Welcome to the forum.

Issie

[jnew]

Hi Issie,

No, that's part of what is so frustrating. No one has been able to give me a "type" of POTS. And shock is the word. I was told at the Cleveland Clinic to wear knee highs, which I got. Then Dr. Grubb's office told me to get the full compression hose.

I am literally an invalid. It's odd, I can ride my exercise bike up to level 7 for 50 minutes, but I can't walk through my house without hanging on to something. I try to stay up. but I must sit. My back hurts so much from sitting. I'm housebound. I have learned a lot. I wish I could stop crying. I don't know what to do with my time as my brain is foggy, my vision shady, and I feel seasick all of the time. I'm usually a tough cookie, but between no sleep and the constant pounding heart with the rocking, I feel like I am not me anymore. I look in the mirror and I don't know who's looking back. I was used to helping our food pantries and toy drives at Christmas and I can't now. I feel lost.

[jnew]

I get so confused. My BP was so low for a while. It got down to 72/35 and my pulse was 100 sitting and would go to 150 upon standing. After increasing fluids and salt and the compression knee highs, my BP went up and my pulse was normal when sitting and didn't go nearly as high. Then last night out of nowhere my BP dropped and my pulse took off and won't calm down. It's hard to wake with this at 3:30 am and then not lie down as they tell me to stay up. I'm exhausted.

You are correct. I have to taper again off of the drugs. It's a very painful, long process. It causes problems with the POTS.

Thanks for answering.

Julie

[Chaos]

So sorry to hear you're having such a hard time with this. Everyone here is (unfortunately) in a similar rocking boat. The good side of that is at least we can relate to you. Although everyone's version of this seems to be somewhat individual, there are certainly a lot of shared patterns of illness and similar emotions here. And, if you've read the forum for awhile you know there's also a lot of frustration at the lack of real treatment options for most of us. While there seems to be a fair amount of research into all this, it doesn't seem to currently be changing our options for help.

Wish I could give you some concrete ideas of things that would help you but by and large it's everyone doing their own trial and error approach to find what works for them. However, please know we understand what it's like to live with this mess and are certainly glad you found the forum. This place has been a real life line for me, I know.

Personally, I've been in a "flare" and remission type pattern with this for 4 years (since a hysterectomy), although only "really" diagnosed since 2010. So while it's a major drag being in a flare time...I've been very blessed that I've also had "good" times too. Not ever "normal" or back to "what it was" but enough so that I can truly be grateful for the ability to do even mundane tasks. Here's hoping your situation will gradually turn around as well. It's really tough hanging on through the bad flares, but at least I've had it long enough to know that pattern and know that it will eventually swing back the other way.

The autonomic doc I see now says a lot of my symptoms "aren't typical". So I can't even be a "typical" atypical patient. LOL However, when I come to this site, I see a lot of people with similar symptoms so maybe I'm more typical than he realizes. Having a resource like this to come to is a huge moral support.

Sending you hugs!

[issie]

The low bp is causing part of the problem with the tachy - high pulse. It is trying to pull your blood pressure up by increasing your heart rate. That's how your body trys to compensate for the low pressure. I understand the sense of being out of control and not knowing what to do with yourself. All of us with this seem to come here when that happens and we see we aren't alone and that others are trying to cope with the same things. We have all become some pretty good researchers in trying to figure this all out. Some of it has been picked up on by the docs and there is testing in progress. So, hopefully, we will find something that will give us more quality of life. Are you on any type of blood pressure meds? That may be lowering your bp more. It's so hard to deal with and it does take time.

Chaos,

Since you and I see the same autonomic doc - just wanted you to know I've recently given him info on the HyperPOTS subset and it appears to be something he hasn't considered before. He is reading what I gave him and is going to get back to me with what I've proposed to him and the experiments I've done in connection with low NO in us. So, waiting to hear something new on our behalf.

Issie

[jnew]

Thanks everyone. I am really down and it helps to have people that understand. I miss so many things as I'm sure others do. Mostly, doing things with my granddaughter. The Holiday is when I did so much with her. I'm so heartbroken for her and me. And all of us.

Issie, you see Dr. Grubb, also? Has he been helpful at all?

I get the BP/pulse connection. It's just so weird to have it change so quickly for apparently no reason. I'm not on any meds except the stupid valium and tapering off of it is horrific.

Thanks for the hugs.

[issie]

No, that part of the messeage was to Chaos - she and I have the same doc at Mayo - AZ.

I hear you on the granddaughter. I just took my neice, who is 17, to Disneyland for her first time. I've wanted to do that since she was born. I've been doing a little better and off we went. I got one of those riding carts and rode all over that place. We learn how to use what energy we have to do what we want to do. If you are in such a bad spell right now - don't let that get to you - it will get better. We all go up and down and it can be from minute to minute.

I think you will find that you'll feel better once you get off the valium and get on the right meds for the POTS. Dr. Grubb will be able to help you - he has written a whole lot of info on POTS and he seems to be very knowledgeable. It will be allot of trial and error - more error than anything. But, keep trying. Most of us have been through almost all the meds. Some of us can use it - others cannot. I'm one of those can nots. I've tried them all and no success. So, taking another direction. Science and medicine keeps advancing and we are learning allot more - about this illness.

Issie

[jnew]

Thanks for the pep talk. God knows I need it. I'm going to post another question on the board.

[Katybug]

Hi jnew,

Just wanted to welcome you and say that you found a good place to find support. Everyone here is wonderful! Sorry you are having a hard time but at least you now have a dx and that always allows for treatment options.

Feel better soon,

Katie

[HopeSprings]

Hi there. I completely understand about the benzos. A rapid withdrawal off of Klonopin made me very ill for years. Later I was diagnosed with POTS. Not sure about the relationship, but I know how horribly sick both can make you feel. That drunk feeling is my worst symptom. I'd say take your time coming off - but get off... and then see where you are after some time passes. Withdrawal symptoms from benzos can last a while. PM me if you want to chat about this.

[Dizzysillyak]

Hi ... Sorry to hear that you're going thru this. About the heavy legs and balance issues, I used to have that

too. Mine turned out to be gluten ataxia and resolved a year after going gf. I still have dysuatonomia,

but as a celiac, I'm prone to multiple auto immune diseases, etc.

My ataxia will come back if I.m exposed to gluten or take klonopin or benadryl.

tc .. D

[jnew]

Thanks for all of the advice.

Yes, how right you are about coming off of benzos slowly. Benzos, I could write a book on. POTS is new. I don't have celiac. Been checked blood and biopsy. I do watch gluten, though. I have been a health fanatic with diet and staying fit for many years. I think that's why this has been such a shock. I was so healthy and had so much energy. I believe either the trauma from coming off of the benzos, or dental work, or mold exposure has caused my issues. Maybe all of them together. I try to take it day to day, but at 55, it's really hard to adapt to this. I feel like someone came in and robbed me of myself.

Went and got full compression stockings today. They don't feel good. The fitter feels that thigh highs would provide as much compression and be more comfortable and easier to get on.

[mwise]

Hi jnew,

Welcome to the best forum for support, love and allot of good information to help you deal with Dysautonomia. I am in my mid 50s too and have good days along with not so good days. I do follow with Dr. Shields at the Cleveland Clinic. He is a Neurologist and quite knowledgeable. He works with on a treatment plan specific to you. He listens and will even suggest things that work from his other patients. I have heard very good things about Dr. Blair Grubb and Beverly, NP.and you may want to follow up with them in Toledo. PM me if you would like to talk personally. Again welcome and a great big hug to you.

[icesktr189]

I came down with this at 18, but this year (at age 22) has been the worst since my initial crash. I feel constantly drunk too and I applied for disability. I no longer drive or work, pretty much just lay around all day. Counseling has helped keep my spirits up a bit, but its still hard when I have a toddler to take care of.

Have you been prescribed any POTS medications yet? You wont know how you are going to be until you try some new meds out Hope you feel better soon and PM me if you need to talk to someone

[jnew]

Hi,

I am new here and don't know how to private message. I would love to speak with someone. I feel so alone and it's so scary.

Thanks,

Julie

[Katybug]

If you click on the arrow next to your user name at the top of this page, it will give you a drop down menu and Personal Messanger will be on eof the options. Click on it and you will be able to message someone privately, very similar to email.

[janiedelite]

Also, if there is someone who's just posted that you want to PM, click on their name (the one that's on their post). There will be a link on the page that comes up that says "send me a message."