Author Topic: POTS/Dysautonomia Support Group  (Read 8082 times)

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #30 on: November 27, 2016, 02:30:20 am »
Hi [...]
So sorry I haven't responded for so long. I didn't know how to see responses to my posts. Just worked it out. Dah...
Gosh, you are suffering and so far out! That's depressing, I sympathise. I read your profile and can't believe you are still sick after only a sporadic use. That sucks!
I am feeling slightly better right now at 6 months. (After a horror 6 week wave at 5 months.) Don't know if this is a window or am I actually getting better. It's has never been clearly defined with me, windows and waves. I have tried to reduce my heart arrythmia meds 3 times now with disastrous results. Scared to try again. I still feel the pvcs even though the meds are preventing them. So weird. Im also on beta blockers and stopping them also brings back the pvcs. What a nightmare! I guess I have to wait longer for my system to settle. I never had pvcs before benzos. They started shortly after I took benzos but I never made the connection and in fact the doc kept giving me more to ease ectopics. I wish for a miracle. The pots i think I had all my life at a sub acute level. Never paid it much attention, just thought it was part of my makeup. I always had low BP and HR. But during taper the pots went wild and I could not stand up for months. Now if I take the drugs it's OK most of the time. I don't think I have sleep apnea. At least not to my knowledge. My sleep is patchy at best but that's benzo [...]... I do notice that when the pots are up they irritate the heart (I guess via adrenaline ) and then the pvcs kick in big time. Im so tired. I have spent 9 years fighting them. My only hope is that they will go away after BW is over. Although there are thousands out there suffering with pvcs and never touched a benzo...
To make matters worse I am beginning menapause and hormones are all over the place. When my eastrogen is down, everything is so much worse. Us women have a much tougher I think. Don't know how old you are but I hope at least that is not your problem. PM me if you like and we can support each other. Hugs
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #31 on: December 13, 2016, 04:28:36 am »
Hi [...]
So sorry I haven't responded for so long. I didn't know how to see responses to my posts. Just worked it out. Dah...
Gosh, you are suffering and so far out! That's depressing, I sympathise. I read your profile and can't believe you are still sick after only a sporadic use. That sucks!
I am feeling slightly better right now at 6 months. (After a horror 6 week wave at 5 months.) Don't know if this is a window or am I actually getting better. It's has never been clearly defined with me, windows and waves. I have tried to reduce my heart arrythmia meds 3 times now with disastrous results. Scared to try again. I still feel the pvcs even though the meds are preventing them. So weird. Im also on beta blockers and stopping them also brings back the pvcs. What a nightmare! I guess I have to wait longer for my system to settle. I never had pvcs before benzos. They started shortly after I took benzos but I never made the connection and in fact the doc kept giving me more to ease ectopics. I wish for a miracle. The pots i think I had all my life at a sub acute level. Never paid it much attention, just thought it was part of my makeup. I always had low BP and HR. But during taper the pots went wild and I could not stand up for months. Now if I take the drugs it's OK most of the time. I don't think I have sleep apnea. At least not to my knowledge. My sleep is patchy at best but that's benzo [...]... I do notice that when the pots are up they irritate the heart (I guess via adrenaline ) and then the pvcs kick in big time. Im so tired. I have spent 9 years fighting them. My only hope is that they will go away after BW is over. Although there are thousands out there suffering with pvcs and never touched a benzo...
To make matters worse I am beginning menapause and hormones are all over the place. When my eastrogen is down, everything is so much worse. Us women have a much tougher I think. Don't know how old you are but I hope at least that is not your problem. PM me if you like and we can support each other. Hugs
Sorry it has taken me so long to reply. We are getting ready to move and it is crazy right now.
PVCs started for me last November--I think benzo withdrawal made my central nervous system very sensitive and it contributed to causing PVCs. My POTS symptoms are pretty much cleared up. But when I eat too many carbs at once, it triggers PVCs. I also suspect that I have some food sensitivities and when I eat certain foods, it triggers PVCs.
I am also heading towards menopause and I think hormonal fluctuations also contribute to PVCs. I suppose I should be grateful that I don't have to take any medications for the PVCs--I seem to be able to control them by what I eat. My central nervous system is still really sensitive--I have a very low tolerance for stress still.
I am hoping that once I get my mouth guard and I get my sleep apnea under control, that my central nervous system will calm down too.
Will try to PM you--but it may not be for a few weeks. This move is stressing me out but things will be much better in the long run--peace and quiet at our new house!
I hope you are doing better!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #32 on: April 12, 2018, 06:43:36 pm »
Hey all-

I reported back in 2015 that my pots disappeared. Well, it has come back a couple weeks ago. :(

I am coming up on 6 years off benzos...

I did drink 1-2 drinks 3-4 days a week (alcohol). Not sure if that contributed to anything.

When I quit drinking about a month ago I also drastically changed my diet and started exercising. That is when my pots came back. Sicker than ever now. I cant get my bp down when I stand..it spikes from 100/60 to 150/100 just from standing...my chest hurts a lot and I cannot walk much.

Hoping for remission again and if anyone has any tips or ideas on how I got ill again please let me know.  :sick:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #33 on: April 13, 2018, 01:37:55 am »
Following this...although I am healed ( for the most part anyway...I submitted my Success Story several months ago, but still hover around 98%...I figure Benzo just got away with that other 2% and it's the ransom for getting out)
  I also started having pvcs, and up and down Pots....I had it in acute about 4 years ago and it straightened itself out....now 4 years later it's back ?...wth ? I am waiting for the Holter monitor and taking about 10 mg ( split) of atenolol. The atenolol is helping, but when it leaves my body I get a flood of cortisol and jitters for a few hours ( just like when I took it b4). I had about 3 days of wild fear and anxiety and the moment I would get hit I would get caught with the '2end' fear and it would get worse. I sort of have a grip on it now and they have become less frequent , but  have that old familiar fear ( damn it !!!) , of not wanting to get out of the bed where I don get them....is there absolutely no end to this ?....Revenge of the Benzo ?....
    Hope this let's go of us....we have paid our damn dues.
                   [...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #34 on: April 13, 2018, 02:33:19 am »
Hi [...]...Be sure that the crazy thing that happens is not HH..I have one and my heartbeat is crazy at times... The vagus nerve gets irritated by it then sends out to the brain heart kidney's ect ...it basically sends out signals to all the organs ...sometimes the HH presses up and can cause us to over breathe cough as well as having fast heartbeat and palpitations ...Just thought I'd mention this ...I am in a support group for HH... They all have these symptoms.                                                                                                                                      Tass.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #35 on: April 13, 2018, 02:38:50 am »
https://en.m.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Postural orthostatic tachycardia syndrome
Not to be confused with Pott's Disease.
Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.[1] This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.[1] Other commonly associated conditions include irritable bowel syndrome, insomnia, chronic headaches, Ehlers-Danlos syndrome, fibromyalgia.[1]

Postural orthostatic tachycardia syndrome
Synonyms
Postural tachycardia syndrome (POTs)
Specialty
Cardiology
Symptoms
With standing: lightheadedness, trouble thinking, blurry vision, weakness[1]
Usual onset
Around age 20[1]
Duration
> 6 months[2]
Causes
Unknown[2]
Risk factors
Family history[1]
Diagnostic method
An increase in heart rate by 30 beats/min with standing[1]
Differential diagnosis
Prolonged bedrest, dehydration, hyperthyroidism, anemia, certain medications[2]
Treatment
Avoiding factors that bring on symptoms, increasing dietary salt and water, compression stockings, exercise, cognitive behavioral therapy, medications[1]
Medication
Beta blockers, pyridostigmine, midodrine, and fludrocortisone.[1]
Prognosis
~90% improve with treatment[3]
Frequency
~ 2 million (US)[2]
The cause of POTS is poorly understood.[2] Often it begins after a viral infection, surgery, or pregnancy.[3] Risk factors include a family history of the condition.[1] Diagnosis in adults is based on an increase in heart rate of more than 30 beats per minute within ten minutes of standing up which is accompanied by symptoms.[1][2] Low blood pressure with standing, however, does not occur.[2] Other conditions which can cause similar symptoms, such as prolonged bedrest, dehydration, hyperthyroidism, anemia, and certain medications, must not be present.[2]

Treatment may include avoiding factors that bring on symptoms, increasing dietary salt and water, compression stockings, exercise, cognitive behavioral therapy, and medications.[1] Medications used may include beta blockers, pyridostigmine, midodrine, or fludrocortisone.[1] More than 50% of people whose condition was triggered by a viral infection get better within five years.[3] About 90% improve with treatment.[3] It is estimated that 0.5 to 3 million people are affected in the United States.[2] The average age of onset is 20 years old and it occurs more often in females.[1]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #36 on: April 13, 2018, 02:48:45 am »
Thanks Tass..!...good call...I do have a hiatal hernia and my physician just ordered another swallow test/x-ray to see if it's esophogeal spasms....thank you so much for sharing your HH sx .....helps me not jump off the cliff with this. I also get palps when I bend over and/or lift something like a roaster pan full of chicken/veggies.....crazy isn't it ?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #37 on: April 13, 2018, 02:50:44 am »
Tass....can you give me the link to the HH  group ....if it's on line ?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #38 on: April 13, 2018, 02:55:43 am »
[...]....wow....thank you for all that great info....very reassuring. Amazing how we learn so much from each other while our physicians sometimes practically just brush it off
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: POTS/Dysautonomia Support Group
« Reply #39 on: April 13, 2018, 02:57:29 am »
[...]....wow....thank you for all that great info....very reassuring. Amazing how we learn so much from each other while our physicians sometimes practically just brush it off

Thank you for the acceptance and I thank you for these efforts- thank God and thanks to us all.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.