Ckitz

On 4/9/2020 at 6:46 PM, Pistol said:

Dear @Ckitz - I too suffer in the summer and have to stay inside, I can't even tolerate sitting on the shady porch. But I live in a 4 season climate state and certainly can tell you that fall and spring are definitely easier on my POTS symptoms. Even very cold winters are more tolerable than a hot summer. Have you tried to use cooling vests etc for walking outside in the heat? My sister also has POTS and she uses cool cuffs around neck, ankles and wrists, she claims it makes activity in heat more tolerable. 

PISTOL, I actually have a cooling vest that I wear in the summer here. Looks like a safari vest. You wouldn’t believe all the comments I get. ...are you a safari guide, are you wearing a bomb vest, do you have a back problem, are you a reporter, etc...so funny. Anyway, it keeps my stomach cold, but I still get very hot especially in my face and still sweat. I also still get sick from the heat, so I feel it just doesn’t work.

On 4/11/2020 at 8:21 PM, green said:

Hello Ckitz (great name!),

In reply to your inquiry: I have found the answer to be yes. I used to live in St. Louis, Missouri but moved to Connecticut for work in January 2019. I have a much better time in the spring and summer here than I did in St. Louis. The difference is quite striking - last spring I thought I was *cured* and quit taking my medication. By August I realized I was not cured and felt disappointed, but this spring I am again noticing how much better I feel. 

I live and work in the coastal climate zone. I literally am less than two miles from the ocean at both home and work. I've read that being close to the ocean has a moderating and stabilizing impact on barometric pressure and temperature and I suspect this plays a role in the benefits I'm experiencing. 

This experience has brought my attention to the significance of the winter as well: I feel about as bad during winters here in CT as I did in St. Louis. I notice less physical symptoms but significant cognitive impairment as the temperature drops below 32 degrees. I don't have a good explanation of why this is - I tried using humidifiers to keep the air from drying out, but this doesn't seem to fix it. I also have moderate sleep apnea and I know that sleep apnea is often worse in the winter, so that may explain it.

It may also be worth noting that I have a mild case of POTS. I am 36 years old and have had symptoms since I was 18, but it does not stop me from exercising or walking around. I have never fainted. I am a college professor and I had some trouble as a graduate student standing up and lecturing, but that was before I began using medication and lifestyle interventions.

I hope this helps! 

Very respectfully,

Green

On 4/11/2020 at 8:21 PM, green said:

Hello Ckitz (great name!),

In reply to your inquiry: I have found the answer to be yes. I used to live in St. Louis, Missouri but moved to Connecticut for work in January 2019. I have a much better time in the spring and summer here than I did in St. Louis. The difference is quite striking - last spring I thought I was *cured* and quit taking my medication. By August I realized I was not cured and felt disappointed, but this spring I am again noticing how much better I feel. 

I live and work in the coastal climate zone. I literally am less than two miles from the ocean at both home and work. I've read that being close to the ocean has a moderating and stabilizing impact on barometric pressure and temperature and I suspect this plays a role in the benefits I'm experiencing. 

This experience has brought my attention to the significance of the winter as well: I feel about as bad during winters here in CT as I did in St. Louis. I notice less physical symptoms but significant cognitive impairment as the temperature drops below 32 degrees. I don't have a good explanation of why this is - I tried using humidifiers to keep the air from drying out, but this doesn't seem to fix it. I also have moderate sleep apnea and I know that sleep apnea is often worse in the winter, so that may explain it.

It may also be worth noting that I have a mild case of POTS. I am 36 years old and have had symptoms since I was 18, but it does not stop me from exercising or walking around. I have never fainted. I am a college professor and I had some trouble as a graduate student standing up and lecturing, but that was before I began using medication and lifestyle interventions.

I hope this helps! 

Very respectfully,

Green

Thanks GREEN...for sharing your thoughts. I do think a place like CT would be better for me. I think any kind of weather change can cause problems, but at least I could go for walks, and exercise is so important. I am glad to hear you are functional and can still work. My heart goes out to young people dealing with an “invisible” illness. 

On 4/17/2020 at 4:27 AM, sitcedar said:

I think, Yes it is a factor since it would either lessen or give a hike on the anxiety side that may affect your Dysautonomia.  If you feel calmer then it would be advantage of living on a cooler place.

So very true, and really such an important point. Anxiety is a bear, and the last thing I need is more of it.

Hi, I am wondering if anyone with low tolerance of heat has found that living in a cooler location creates a better quality of life with Dysautonomia. I have lived in West Palm Beach Florida now for around 11 years. I am 65, and have had Dysautonomia all of my life,but has gotten worse as I get older.  The heat makes me a prisoner of my home. Even the winter is mostly too hot. I suffer so much outside, and miss going for long walks. Sometimes I think maybe I would also be intolerant of cold, but the cold would not dehydrate me and make me nauseous.  I am here because my son lives here, and I love being near him, but I question my quality of life. I can’t enjoy what Florida has to offer. I just wish that at least I could enjoy walking. 

12 hours ago, ANCY said:

I deal with this most days, for me that's my better days. Range from 60/30-140/90 normally and a lot of days get up to 160/110. We are not able to do a whole lot treatment wise as I pass out several times a day because of low blood pressure drops and we don't want to push those any lower. It is really a big balancing act sometimes lol! I am 26 and was declared disabled at 20. Use florinef (0.1cmg 2 x a day) and midodrine (10-20 mg 5 x a day) and have used clonidine to try and bring some of the highs down but seem to be reacting to it...

Recording a log of BPs and bringing it in to my dr has been very helpful in the past. Periodically they'll have me do that so we can establish a sort of "baseline" to go off of. 

ANCY......Thanks so much for your input. I was  getting frustrated. I got scared I was going to have a heart attack, but when I think of it ,I have had so many attacks, I would have had one by now. Keeping a balance is hard. I have been going for long walks and I have a feeling this is causing my spikes. I need to keep a BP record again.  I hate seeing someone so young dealing with this....my heart goes out to you. 

12 hours ago, MomtoGiuliana said:

Have you mentioned this symptom to your doctor?  Perhaps keeping a record of it over time and sharing that with your doctor would be helpful.  I have also found that electronic bp monitors can be off.  You may want to bring your monitor to the dr's office and have them check it or compare your bp to what they measure in the office.  Dysautonomia can cause changeable bp.  Although keep in mind that bp varies even in healthy people throughout the day, the readings you are getting sound high.  When my POTS was more severe I had episodic high bp.  I still take a beta blocker, that definitely helped.  Also I took an SSRI for awhile which seemed to help "even out" my sympathetic nervous system.

You are right, I need to start keeping a record again. One doctor , awhile back,said my monitor might be off, so I did research on a reliable monitor and bought it. I still got the same high numbers. I take a beta blocker. I just wish I knew what I was doing to cause it to go so high. Maybe just being in a standing position ( walking) too long. 

I was diagnosed with NCS after a tilt test when I was in my 50’s., I have been ill since childhood with Dysautonomia and on disability since the age of 40. I suspect I have POTS despite being told I have NCS.  I don’t go to a doctor much because they don’t know what to do and I have limited income. I am disabled because of my Dysautonomia.. The last three years I have had a new problem with my blood pressure. Resting, it can go up to 160/ 116 or more, it can also be normal. The bottom number tends to stay in the 90s or 100’s...The few times I have seen a doctor...my BP has been normal, so they don’t see the problem. It has gotten so high I got extremely dizzy and was vomiting. In anyone's experience, should I be concerned? Can Dysautonomia cause this ?  Also, can exercising too much, or standing( walking) too much, do this, in your experience?  I eat healthy and exercise as much as possible.. I do have a lot of physical pain, but I don’t think that is what pushes the blood pressure up. 

I am very aware this form is not for professional medical advice, but I would greatly appreciate info on anyone else's experience concerning this blood pressure issue,  and what they do about it. 

In the past I have tried Trazodone, which only helped for a short time. Since then I have been diagnoised with Idiopathic hypersomia.

Which basically means that no matter how much I sleep, I am still very sleep deprived. It is very disabling. The only thing that helps me is swimming. It makes me feel more alert , and I funtion better. I have to be careful though. I do warm water exercise...just stretching is the best. Two much exertion can just overstimulate me, and then I can't sleep.

I have always benefited greatly by doing water exercise. Not arobic type water exercise, but gentle movement like the breast stroke, or side stroke. I also take yoga type warm water exercise. This has helped my quality of life more than any medication. I also go for walks.

The recombent bike was not noticeably helpful for me.

If anyone feels uncomfortable going to a regular gym, you can join a hospital based gym/pool. That is what I always do. They usually have a warm water therapy pool, that is great for gentle exercise. You just need a Dr's note to join.

I think this illness requires self monitoring, and that is ok.. I have heard the expression, " don't let your illness define you" but it does define you to some degree, wether you like it or not. For me, it is a full time job, trying to keep a healthy balance between living and taking care of myself, so as not to get worse.

I have been ill since I was a child, but became fully disabled at the age of 42. I am now 60. It was a gradual decline. I think being a single parent with a lot of stress probably didn't help . Anyway, when I became disabled and could no longer work. My brain fog and exhaustion was severe. I went through a period of " morning " ....the death of my former self. Over time I learned that distracting myself ...seeing good friends, doing something fun, exercising ( swimming, warm water exercise and walking) was the best thing to do. But it has to be positive experiences. Negative experiences just amplify the misery. I now focus on what Positive things I experience, and never dwell on what I have lost. For whatever reason...this is my life. It could be worse. I have a roof over my head, and a doxie and Pomeranian that bring joy and comfort. So when I am stuck on the sofa, what can be better than having my two buddies laying with me. Anyway....My heart goes out to all of you that have this invisible illness.

I get great benefits with gentle swimming, long walks and warm water therapy ( exercise) . I've had to accept that aerobic types of exercise are just going to make me ill.

I deal with Miclonic jerks also. They can be quite violent at times. It can be in my chest, shoulders, neck and sometimes in my throat causing me to make a verbal noise. Sometimes it is just a couple jerks...other times, on and off all night. I find that strength exercising can cause it to be worse. Swimming is the best thing for me.

It would make sense....

.I don't gasp for air very often either. I guess most of the time I am not aware. I was surprised to find I had central sleep apnea. Apparently it can lead to a stroke or heart failure...so getting a sleep study would be wise if you are dealing with serious fatique. It needs to be treated.

Nymph..... Yes, I have wakened gasping for air, and my heart races occasionally. I have had disabling fatigue for years, and that led me to having a sleep study. Do you have a fatigue problem?

I have been diagnoised with Central sleep apnea.( apena resulting from brain not regulating breathing properly) Since Dysautonomia is a malfunction of the autonomic system, and breathing is part of it's functions, then would it be possible that this apena is a result of having dysautonomia?

Anyone dealing with this?

Thanks for sharing Sara.... It is complex stuff, but the jist is that studies have not yet confirmed that these treatments are the answer.

Little Blue Jay....

The TVAM procedure stimulates nerve fibers, which causes increased sympathetic functioning ( reinvigorates ANS)

So everything related to autonomic dysfunction is improved with better functioning. They mention, chronic fatique, cognitive impairment, thermal intolerance, waking headaches and bladder/bowel dysfunction. And others....not listed.

Has anyone heard about this procedure. It is supposed to improve symptoms of Dysautonomia...such as fatique and brain fog. The procedure involves inserting a catheter into the jugular vein. The doctor in California, who does this, says he has good results, but not all people have improvement.

Recently, my BP has shot way up. Now ,my lower number..diastolic stays at 95 - 102. I am feeling sick...nausea and chest pain, and am hot one minute and the next minute I have goose bumps feeling chilled. . These numbers occur even when I am not exerting myself. I saw my doctor and she wants me to record my BP first thing in the morning for 17 days..til next appt. . Is this a normal Dysautonomia problem? I want to go swimming but I am concerned it will shoot up too high. Is resting helpful? I am always on the go no matter how I feel. Can this cause a stroke, or heart attack? I am scared. Would welcome any advice from anyone else that experiences this.

Thanks so much Katybug! I will check these out.

Thanks so much Katybug That is very helpful. What braces do you wear? It is unsettling that I am a serious accident waiting to happen. I will look into EDS.

Since I was young, My ankle or both ankles collapse suddenly, and I end up face down on the ground. Recently I broke three bones in my foot, when both ankles collapsed. My ankle muscle strength is not the issue, so I can only assume this is a brain thing. Could Dysautonomia be causing this?. Anyone with a similar problem?

JACKIEMXOXO.... That is interesting. I think what is concerning, is that my doctor tried to take me off a beta blocker, and the result was that my heart started mis beating a lot, and I got very uncomfortable chest pain....so I went back on. You would think this med would keep my BP down. Like you said...this just could be another dysautonomia malfuntion.

BATIK.......I actually eat very healthy. No processed foods, no meat, no fried food. When told to add salt, I bought popcorn to snack on, and added salt to my veggies, potatoes etc. at dinner only. I really like salt so I do add a little more than just one little sprinkle, but over all it is not excessive.

Thanks Mike, that is helpful.... I can't afford to go to a specialist, so I do my best to read up on other peoples experiences.

And Batik....I just add salt to my meals, and eat salted popcorn. Something I haven't done before.

Thankyou for responding. My intent wasn't to get professional advice...I just want to see if someone else has dealt with this issue of having high blood pressure and taking salt. I have an appointment with my doctor...but she doesn't know anything about dysautonomia.

Just curious if anyone else has dealt with this issue....

When I was diagnoised, I was told to increase salt intake. I was actually glad to be adding salt to my diet, since I had restricted it prior. Now my blood pressure is up to 150/ 94. Don't think these numbers are good. I am concerned that that salt is bad for me. I am on metoprolol succ ER 50 mg, which I'm pretty sure is a blood pressure med. I am confused...