nelgkel

Hi,

I wonder what experiences anyone has had with HRT?

I was on it for about 5 years. During the last 18 months on it my POTS symptoms became worse and more frequent. At the time i did not know why i kept feeling ill as i had not been diagnosed and was still being treated as neurotic. I knew there was a real physical problem and i kept searching for causes. So during this period i reduces the HRT and stopped and started it to see if it could be contributing.

I finally came of it last summer and my symptoms came to a head in November and i got a diagnosis after being admitted to hospital 3 times.

I am now wondering if going back on HRT might make my symptoms any better.

I do have hyper-flexible joints and suffered a lot of joint problems when I first tried to come off the tablets. I am having bowel and gyny muscle problems.

I know that progesterone probably makes things worse.

does anyone have any experience or know more about this.

Thanks.

when i had total hysterectomy my symptoms got much much worse!! then in 2009 I had a hormone shot...estrogen, progesterone and testosterone within just a couple of days I was in the er with life threatening ventricular tachycardia...which I had been having for 4 yrs prior! but the hormone imbalance just sent me over the edge. then the shot was just way too much for me! I was on vivelle dot patch until recently...I just weaned off of it. I now use Garden of Life Oceans 3 Healthy hormones and I am OFF all hrt...BUT my POTS symptoms have gotten worse over the last few months too...ughhhh it is a catch 22...hormone wise I am feeling WAY better..no hot flashes, not edgy feeling all the time, calmer but now pots wise...purple legs, high hr, dizziness, severe headaches, visual disturbances, MAJOR brain fog...now just trying to get pots symptoms better...think I may have NMH too among other things...I do know that POTS and dysautonomia is related to bowel and gynecological issues...I have hiatal hernia, gastroparesis, ibs, interstitial cystitis and they are ALL related to dysautonomia issues!!! Had no clue until 2009 when I started researching POTS...and I have had those things and more for years!!!

so yes, your pots~dysautonomia are contributing to those issues...

have you thought about trying the vivelle dot patch?? it is the ONLY bio identical pharmaceutical HRT..it really works good..I just don't want to be on any pharmaceutical drugs if possible...

Blessings from FL

Nelgkel - thanks for that suggestion. I am on the generic. I'll add that to my growing list of questions for my dr next week!

No problem dizzyde. I don't remember where I saw it, but it was on a POTS group where they discussed generic vs brand and those on brand had a much higher success rate. So I just wanted to pass along the information I learned.

Thanks everyone for responding to my concerns. I feel a bit better about taking it today, although I am going to bring up the dependence & tolerance issues with my doctor when I see him. Clearly I need something for my dizziness, and would rather keep it at as small a dose as possible. I just wish doctors would be more forthcoming about these potential issues with patients before we get started on meds! A few of my Drs are great that way - but the majority are afraid they'll freak us out. That's where we as a group are different - seems like most of us have been through the ringer with meds and would rather be informed.

firewatcher - thanks so much for all of the information and thoughtfulness about differentiating between the meanings of these terms we all throw around. I've never had an addiction issue through all of the meds I've had to trial, but have had some horrible withdrawals (mostly anti-depressants) because of my body's chemical dependence that seems inevitable and certainly out of my control.

Out of curiosity... how long has it taken you all to notice a difference in your symptoms after starting klonopin? This is week 3 for me and i'm still dizzy all the time. thx

Are you on the brand or generic?? I found that when I switched to brand name Klonopin it helped significantly more. I was on Klonopin for years for "panic attacks" that were sooo severe that I thought for sure I would not live through the night. After my ablations I was able to wean off of it and only recently with the return of POTS symptoms have considered going back on it. Well, I started writing that I did not have any dependency issues with it, but in reality I was VERY dependent on it! I went NOWHERE without it!! I had such severe "panic attacks" that I was petrified to leave home without it. I did not take it every day, but always had it available for when symptoms were worse. Although when my POTS hit full force in 2009 and I could not even raise my head out of bed without my hr going almost to 200 I stayed on it daily.

I found it to be very helpful and the titrating off it was not bad.

blessings from FL

I am going to check into Mayo after my next Emory appt. I am actually closer to JAX than ATL. THanks for the info - you know, that is the Dr. my cardiologist actually mentioned at Mayo; he must be known for his work!!

I hope you get some insight and direction from the Emory appt. My best friend lives in GA. We LOVE it up there!! Glad to hear that your cardiologist recommended Dr. Kusumoto. He really has been amazing!! When I first started seeing him he wanted me to get off all of the meds my local cardiologist had me on and when I was ready to do that Dr. Kusumoto said to call him and he would call me back with instructions...and you know what?? HE called! not the nurse or secretary! Every time he has said he would call he has!! My last ablation he did the study and had treated 2 areas in the heart, had just pulled out the catheters and my heart went into arrythmia again! He was shocked because I was in a sedated state..he prepped me and treated that arrythmia THEN let came out and talked to my hubby and told my hubby he was going to sit behind the glass partition in the procedure room for 2 hours to make sure nothing else popped up before they pulled everything out!! He has called me at home to check on me after procedures...I stayed in the hospital overnight with both ablations..the first ablation I was his only patient because I was such a complex case. I had Ventricular tachycardia with AV and SA nodal reentry tachycardia.

He is very compassionate, caring and knowledgeable.

Please let me know if you do go to see him.

Many blessings from sunny FL

Hello, I do not know of any drs in GA because I live in FL, but I was diagnosed by my local dr who said "I can diagnose this, but not treat it" So after much research I found that DR Kusumoto at the Mayo clinic in Jax treats POTS . He is AWESOME!! I was diagnosed in April of 2009 and after seeing Dr Kusumoto and having two EP studies they found 5 arrythmias, which dr Kusumoto believes were making my POTS symptoms worse. They did improve a LOT after the ablations, but the last few months my symptoms have been returning. I have been extremely happy with the care I have received from Dr Kusumoto and his staff!

If you are only a few hours from the Mayo clinic in Jax it is most definitely worth the drive. I drive over 3 hours to see him and it is well worth it!! I will most likely be going back for another EP study in the next 3 months.

Praying you find some anwers.

BLessings from FL

I was born 9 weeks early at around 2 lbs. I have recently been diagnosed with POTS, went to Mayo clinic in JAX and Dr Kusumoto treated my VT issues that I had upon ER admit. in April..did ablation for SA node reentry tachy and AV node reentry tachy. it is thought that these issues were birth defects caught now at the age of 37!

I just went to Mayo in JAX and they are weaning me off of my bb to put me on a hr recorder that records my HR all day long.. they will be adding a calcium channel blocker for a bit, they are not stopping the klonopin and klor con though.

I do know from working in pharmacy, you should never stop bb or ssri cold turkey, all the other users online are correct about that!! It definitely needs to be titrated down!

blessings, kelly

The worst part is after I eat, I felt horrible. After eating, I feel like just laying down, I get bloated easily and full quickly, lightheaded, short of breath, and shaky.

It seems as after 4 hours or so, I feel better from that.

I cannot exercise at all like I could before without getting extremely short of breath and lightheaded.

I guess those are some of the worst problems, shortness of breath, dizziness, shaky, fatigue. I stay so tired,

It is as if my body says, "welp, no more energy for you today." At work my body cannot handle stress like it used to, small things stress my body out.

It is as if my body overcompensates.

My doctor thought Wellbrutin would help my fatigue, but because it feels like I get overly stimulated from lights, crowds, laughing, stress, would that be the best medicine to take. Does Wellbrutin slow your system down? .

Hello, i am new to the board, but have struggled with symptoms for over 4 years and just diagnosed.I too, am on a beta blocker and that has helped.

I also have issues when I eat, one thing that has helped significantly is to eat several SMALL meals. upon waking in the morning I make a smoothie. 1 banana, strawberries, blueberries, organic yogurt and flaxseed and enough water to cover the fruit. If I do that my stomach has much fewer issues during the day. It is easing my stomach into working again. I do have gastroparesis and large meals, meals with too much acid kill my stomach! have you tried eating while laying on your stomach?? i saw somewhere a young lady had issues similar to yours and she found by accident that laying on her stomach while eating helped..it is worth a try

I am so sorry that you are having such a rough time.

I will give you my experience with wellbutrin and SSRI's. before I was diagnosed and my dr just thought i was depressed he put me on wellbutrin to give me more energy. IT WAS SHEER ****!!!! I felt like I was going crazy, EXTREMELY ANXIOUS, overly stimulated, easily agitated.

SSRI's I also struggled with sexual side affects, it was quite disconcerting!

I was just recently reading an article http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm and after reading about meds used for treatment, I was thinking about using SSRI's until I called my psychiatrist and he looked up what my side effects where when I took it 4 years ago..i could NOT remember...

some POTS patients do well on wellbutrin, but I definitely wanted to let you know about my experience with it, I feel that it made my symptoms significantly worse.

Praying that the lord will calm your symptoms.

Blessings,

kelly in FL

I really like my omron wrist bp monitor. have compared it to regular bp monitors and it reads very close.. it is easy to transport with you also because of its size

thank you all for taking time to relay your experiences at Mayo. I have been referred by my Electro Physiologist Cardio to dr Kusomoto. I have been happy with my EP Cardio, he is very open minded, very understanding, but only has 5 pots patients, he did about 1,000 TTT to get those 5 and said out of the 5 mine was the worst. my hr went up to 170, felt awful, but nowhere near as bad as I did upon the day i was admitted to the hospital...i wonder what my hr was in wal mart when it all started?

Anyways, thank you so much and I am not sure if I should take the time to go to Mayo or not..I do have a diagnosis, my hope was to find the mechanism of my pots to better treat it.

I have a notebook full of notes that I have gotten online and my dr here locally took the time to look at some of them and said after reviewing them that he learned something new..

Looking forward to chatting with all of you.

blessings

kelly in central FL

I am new to this group and have gotten so much information from this website! I was just diagnosed on April 14th by TTT. I went into the ER on 4-8-09 and was admitted to ICU, it is a long story and right now I do not have the energy or the brain power to type it all out.

Right now i am in the process of being referred to the Mayo clinic in JAX and shared the information about the drs with my EPS cardiologist who diagnosed me. He stated that while he can diagnose POTS he is not a specialist and thinks it would be good for me to go to a specialist.

Who would you recommend?? Dr Fred Kusomoto or Dr. William Cheshire? Who treats POTS more and who is understanding?

I live in central FL and would love to find other POTS patients and their experiences with what DRs helped them best.

thank you ALL so much for any help!

Blessings,

kelly

PS..it is so nice to finally come to a board where others really understand! I have had symptoms for over 4 years and FINALLY got a diagnosis..feels good to know I am NOT crazy!