DIXZELAND

Hello, I've been dealing with POTS since Nov.2009. I have had every test known to man, so I thought. I have had two cardiologist confirm I have POTS. Lately, if you've read my recent posts, my bp and hr are way way up there with no relief from my medications. So yesterday while at my POTS dr. he said "Lets do a Renal Artery Ultra Sound". So I did in his office. And guess what????? My right Renal Artery is 80% blocked! Renal Artery Stenosis causes high bp. Now he said you may NOT have had POTS or this could be a secondary incidence. I go for a MRA which will tell them just how blocked it really is. And then the surgery to place the stent in the blocked artery. Did I tell you how HAPPY I am to have found something that might be the problem to my high bp, hr, nausea, palpitations and confusion???

I am 48 years of age. I will tell you while I am happy, it is bitter sweet. I am scared at the same time. But this kinda gives me some hope of getting relief.

Just wanted to put this out there for any others whom like myself couldn't find a drug that would help with the high bp and hr.

((hugs to all))

Dixie

It sounds like you are having a flare up. For most people POTS symptoms are a moving target with some days better than others.

I would track the bp and hr and call my doctor. They may want you to adjust your meds to get you through the flare up and/or increase fluids (for me, increasing fluids often brings bp down when it is higher than normal).

I had a bd flare up in April--my bp went up to 160/90. I was already taking a beta blocker. My dr had me triple my dose, and then a week later the flare seemed to have ended bc my bp was way down (and I felt better) so I weaned back down.

Hope you feel better soon.

Katherine

My POTS doctor suggested getting a Home Health Nurse to come to my house to give me IV fluids. I drink so much on my own that I spend half the time in the bathroom. But I guess it might be worth the effort to try.

tthanks~Dixie

Here lately the past 4 days, my medication Clonidine is not helping with my excellerated bp and hr. Will it eventually come down on its own? The only relief I get from it is when I lay down. But as soon as I get up to go to the bathroom, etc., there is goes again.

Anyone have any answers to this or experienced this? I am in a wheelchair, but just being upright causes it to go haywire.

I am quite concerned as it has never lasted this long while being on medication.

Thanks,

Dixie

I have been seeing my POTS doctor for almost one year now. He's tried different medications and they work from time to time. Right now I'm on Clonidine and Inderal. These two are not starting to work either. My blood pressure and HR are though the roof many days.

I was wondering if I should try to persue seeing a doctor at one of the famous hospitals like Mayo Clinic or Vanderbelt or any others whom are world known. I just wonder if it would make a difference in my POTS. I am going down hill slowly but surely. Little by little not being able to do the things I did just months ago.

Please any suggestions as I am desperite. Some days I don't feel good about myself and want to end it. I can't keep feeling this way. I feel out of control!

Thanks,

Dixie

Ok, finally decided to get a disability lawyer and begin the process. Had my first phone interview with SS on Wednesday. We will see how it goes. Ended up in the ER lastnight for severe flare POTS, had 3 bags of fluids and blood work. My doctor is suggesting that home health come out to my house to administer IV fluids frequently to avoid having to go the the ER.

How can they NOT declare me disabled? In a wheelchair all the time, can't sit up for more than 2 hours at a time. I will fight them all the way!

Any suggestions for getting disability? I know I'll have to fight hard because my disability lawyer hasn't ever heard of POTS, so I will be coaching him too:(

(((hugs))))

Dixie

I too have abn ANA for years. I don't have odd rashes, but do have mouth sores, sensitivity to lights, fatigue and some joint pain. However, no actual dx of LUPUS. Hang in there I know its frustrating.

Dixie

I am 48 and going through menopause. When I have a hot flash, my heart rate spikes along with my blood pressure for the min. or two and once the hot flash goes away so does my symptoms. But this happens throughout the day and night. I refuse to take Estrogen due to it might cause breast cancer. I do take a soy product over the counter, it helps but not completely.

Dixie

Yes, had one its basically like a 24 hour recorder for your heart,mine was in six months then I received a pacemaker. Its a good way to see what your heart is doing.

What may I ask was the reason for the Loop Recorder and then having the pacemaker? I have the high bp and high pulse rate. I was so nervous that I didn't even ask the dr. why.

My POTS doc. told me that he was thinking about implanting a Loop Recorder. The news shocked me therefore I was too scared to ask questions about it. I am nervous all the time and have anxiety issues.

Can anyone tell me their own experience of having one. He said it would be place for 2 to 3 months.

Thank you,

Dixie

My doctor had me raise the head of my bed by 4 inches. It puts me at an more upright position so to help my blood pressure regulate better so when I go to get up in the morning it doesn't have to work so hard and become high so suddenly. I struggle with high bp when standing. My doctor said it will take about 3 weeks for my body to adjust to this slanted position. And it did. Hope this makes sense to you

Dixie

Thanks Jared, when someone finds the missing piece to the puzzle, we will all be set free. This illness has brought me closer to God, and that's a good thing to come out of a bad situation:)

Well here I go again. A major flare up today. I noticed over the past two days that I was becoming increasingly fatigued, but that happens a lot. But today was a full flare with high bp and hr in the 136's. Then the panic attack started because I felt out of control. What in the world triggers these attacks and why. I wish I knew so I could stay away from what ever it is that is doing this to my body and mind. Because of this flare up it will take me two days just to feel better and that's if I start to have a good day tomorrow, if not the cycle continues.

Any have any advice? I am now staying home all day, so its not work related. I don't go anywhere.

Thanks,

Dixie

I totally agree with you. If I didn't have God, I would have nothing! He is the reason for me to keep living and my faith has become come stronger because of my POTS!

You mentioned that you didn't want to go to your parents, but could they come stay with you? I totally can relate to your symtoms. When going to Walmart, I actually had to borrow one of their scooters, because I couldn't make it through the store walking on my own. I later got a wheelchair and used it quite a bit. The days that I feel great, I walk on my own.

Wish I could be more help. When my situation gets really bad, I, like you can't eat. I feel nervious and anxiety. I do have xanax that I can take prn. It helps to keep the edge off from me having a full panic attack and making things worse making my heart rate rise and bp get way out of control.

Sometimes I get on this web site just to see and read about others. It helps me to know that I am not alone with this. It's like having tons of friends, but on the website.

take care,

Dixie

My cardiologist whom is treating me for POTS, told me that before I have any dental work that requires numbing, that I would need to have 2 bags of IV fluids, to keep my blood pressure form rising.

My neurologist and I discussed the possibility of using Dr. Levine's exercise program for improving my POTS. Since my doctor is a neurologist, he would agree to send the research team the data showing my diagnosis, but is unwilling to monitor me. If I go that route, he suggested I get a cardiologist who is associated with a cardiac rehabilitation program.

I agree that a cardiologist would be the doctor of choice to be the contact point between Dr. Levine and me. But, I do not have one.

Since my neurologist has seen another study in which POTS people were using recumbant bicycles (or some such) to improve functionality, he suggested continuing what I currently began last week in the fitness center, and the other exercises I do on my own. I will be seen again in three months to see if I notice any improvement, and if he can measure any improvement via the poor man's TTT (poor man's TTT means stats sitting, then at intervals of standing for up to ten minutes).

My neurologist does not see the need to use Dr. Levine's program, per se, since he feels we can benefit from exercise on our own.

I will do my own experimenting. If after three months, I think I've reached a plateau and desire to move forward, at that point (he suggested) I will get in touch with a cardiologist to monitor me and give suggestions.

So, for now, I'm sticking with what I'm familiar with, and that is:

One of two exercise/stretching DVD's for abdominals on a daily basis.

Light free weights at home for use on the floor for biceps, triceps, pectorals and shoulder muscles.

Using some of the weight machines at the gym I have just joined (I've used them in the past (pre-POTS), and am familiar with them) , including their abdominal machine.

Using the recumbant bikes and treadmill to monitor my heartrate, speed and time.

We'll see how it goes. Personally, I do not see how I can "cure" POTS unless I modify something. Apparently, Dr. Levine is deliberately having patients enlarge their hearts. I will not do anything of the sort unless I'm under a cardiologist's care.

I said I'd check back in, so this is the latest.

Are you in the Dallas/Ft. Worth area? I have seen Dr. Levine and now follow up with Dr. Amer Suleman, a cardiologist for my POTS. He has helped me very much!

thank you Brye:)

Have you ever considered a recumbent bike? I have slightly elevated blood pressure, not in your range, but by working on a recumbent bike it has been regulated and better lately. Just a thought---and yes, I would avoid exercising in the upright position for now. But walking and recumbent bike sound like great exercises if you can tolerate them. I am religious on the recumbent bike, 6 days a week, and I feel it has been the #1 contributor to my recovery.

I am looking on Craigs list for one right now. Do you have any recommendations? I have read where the batteries go dead within a few times of it being used and that an a/c adaptor is helpful.

just to mention, she speaks of Dr. Levine in the Potsrecovery.com, and this is the Dr. in Dallas Texas that diagnosed me with POTS!

please keep me posted about your new doctor visit:)

I have been tested for the tumors which came back negative. Is there a reason why you don't have the pheos removed? Are you able to work? I recently just got a wheelchair to help me be more independent. Has your dr. done the large panel of blood work to see if there is anything abnormal that is causing the POTS? I am having that done tomorrow.

G'morning my friends. I have a few questions that really need answered. I have been dealing with POTS since Nov. 2009 a little over a year. I have had to quit work and stay at home with the past month due to the worsening of the POTS. My doctor has taken me off my Beta Blocker because it was working against me and making my POTS worse. This past two weeks my doctor and I along with the Exercise specialist, Biofeed back person have come up with a plan. Everyday I suffer with constant high BP upon standing, rapid pulse rate at the slightest activity, and severe fatigue.

They tell me with the exercise program and tons of fluids, this will get better if not completely normal. My question is this, How much of this is true? I can't even go to the store without feeling like I am going to faint and my heart is going to jump out of my chest because of walking from the parking lot into the store. Taking a shower is much of a chore for me. It literaly takes me a good hour to get out of bed, sit up for 15 min., take a cool shower, get out and rest, get dressed, rest, brush my teeth and dry my hair. After that I lay down from exhaustion.

Please anyone who can help me understand this. I have to make a decision as to work, quit work, try for disability or give up completely.

Dixie

Just curious how many people are having to use wheelchairs because of their POTS. I sometimes feel I would get around better using a wheelchair. My legs become so weak and heavy not to mention when I stand up my heart rate and pulse start like the beat of a drum.

Bless Everyone!

Dixie

Sorry guys, I tried to work the POLL thingy but I don't know how.

ER nurse to ER nurse! I am also unable to work due to my POTS and actually don't know that I will ever be able to work in an ER again. My hand tremors kick in if I just am in a hurry to do something much less stressed about something. I never saw a Phys... doctor. My cardiologist was my main resource. MY pcp was very supportive as well but I don't believe he was critical. I was approved on my 1st try but I'm a frequent fainter as well which I think was key in approval. High risk for syncope I think was key for me. I did have a form a lawyer friend had me submit with my claim that my doctor filled out and it made it clear what my limitations were that made me unable to work. I've mailed that out to several people on the forum and I would be happy to send one your way if you want to check it out. It gave the doctor a chance to estimate the # of hours I could stand/sit/walk/etc. Also he said it was helpful to make it clear the # of days I was likely to miss work / month. Maybe the doctor or your cardiologist would be willing to fill something like that out. It's not really supporting your request it's just providing facts and allowing ssdi dept to make the decision. So stressful!! PM me your address and I can send you the form if you want it. Wish I had better advice! I was so shocked and thankful to be approved the 1st time around and I'm not sure what the reason was. Good luck and hopefully you'll get a surprise approval as well. You never know! I never even saw an autonomic specialist.

Brye

Hi Brye, I would be interested in one of those forms you talk about in your response. Can you email it or send it by US mail? Thank you Brye

My flight would be around 2hrs each way. I thought I'd ask for a wheelchair upon arrival so that I wouldn't have to walk so far to the car or curb. Thanks all for the advice, this really helps!