Meemee

Hi again, so sorry to keep on posting, this is all just very new to me so I end up having lots of questions!

I'm having a very hard time at the moment, which sadly I'm sure you're all far too familiar with. Every day I seem to be getting worse, I feel weaker and weaker and have become so slow and tired.  Its making me feel like I just want to give up, every day is so hard. Its coming up to exams at university so I have to try and get myself to my lectures but I'm so mentally drained also with the worst brain fog! After all the tests I've had done its seeming less likely that they are going to find the cause of my autonomic dysfunction. Sorry if it sounds like I'm just complaining, I just wanted to know how to cope with all of this? You all have already been so helpful and I'm really grateful for this forum; it has made this problem in my life far easier to deal with. ❤️

On 3/21/2019 at 6:04 PM, WinterSown said:

The management is towards lessening the symptoms. One of the biggest assists for me come from eating a healthy diet and focusing on foods that are rich in electrolytes. Walking is a great exercise that will help with elimination. In the beginning of my symptoms I lost 60 pounds without trying and I needed surgery to close a fissure. Ugh.I  suggest that if you have any problems with your digestion or passage that you do see a gastro before you need to see a colorectal surgeon. Once we realized how dysautonomia was effecting my digestion I was able to make some changes and start improving. My cardiologist, EP and neuro do all help me with these symptoms, and all the rest of them too. This is a treatable condition--it can take a little time to learn how to limit its effects but that will happen. 

 

Thank you for your response, I definitely need to improve my diet! I'm glad to hear it is treatable   

14 hours ago, Pistol said:

Hello @Meemee - please do not despair! If you are just in the process of being diagnosed you have not even been properly treated yet. There are many different medications that have been proven to ease the symptoms of dysautonomia. I myself tried many, many meds but eventually found the treatment that was right for me and today am much better. It takes a lot of lifestyle changes as well, though. There is no magic pill, we have to be good to our bodies in addition to taking meds. Think positive, do not loose hope and be good to yourself!!!

Thank you so much for your message, I feel much better I'll try not to worry, I'm so glad you have found something that works for you xxx

Hi again! I have just seen a neurologist yesterday who suspects that I have a case of autonomic neuropathy. I am waiting to undergo some tests to confirm this. This has scared me a bit because I have heard that this condition isn't very treatable, especially if the underlying cause isn't found... I was wondering if anyone could reassure me; do you know of any effective treatment for autonomic neuropathy, or will I just have to grin and bear this for the rest of my life? Its having a really negative effect on my life already, and I'm just starting uni 😕

Any response would be really appreciated! Many thanks xxxx

On 3/13/2019 at 6:51 PM, RachaelLee56 said:

Thanks! Have you been diagnosed with Hyper POTS?

No, but my doctor suspects it, just awaiting some tests now xx

51 minutes ago, Pistol said:

@Meemee - have you taken your BP when you feel like that? It sounds like it could be your BP dropping. I too reach my limit around 7 pm every evening and often go to bed at that time. 

Can't afford a blood pressure cuff at the moment sadly 😕 

55 minutes ago, JimL said:

Never used to be cold before this. Maybe it's the weight loss too, but I laughed at the locals when they'd put a parka on when it was 32 out. I used to go outside in shorts at that temp. Now I feel cold. The heat hasn't hit yet, but I am not looking forward to possibly finding out I can't take that either, although I used to handle cold much better than heat. I've seen 123 here. 

Hoping it wont get too hot where you are!

3 hours ago, ScottS said:

I struggle staying warm enough even when outside temps are in what most people I know would consider a comfortable range. If I let myself get too cold, all sorts of POTS related troubles will kick in. Just last week I decided to prune a pair of full sized (20 year old) grape vines I have growing in my back yard. Now, pruning grapes properly can be quite a bit of work (to get them right for the upcoming growing season). It took me just shy of 3.5 hours to trim both vines to their proper size and configuration. Working from around 1:00 PM to 4:30 PM with the sun out on an unusually temperate late winter day AND dressed warmly in layers I thought I would be in the clear. Well, I was wrong. Just as I was finishing up a wave of palpitations came over me followed by some off and on and at times uncontrollable shivering and shaking. The back of my neck grew oddly flush and my head started aching. (Jn fact, felt like it might split apart ear to ear.) I went inside and tucked up in a ball in the very chair I'm sitting in now with my trusty space heater by my side oscillating just a few feet away, cursing both my dysautonomia and my foolishness. I've lived with POTS for (at least) a generation longer than you've been alive. One adapts because you have no choice. And, sometimes, you screw up and don't do what's best for you. If anything, living with POTS is a trial by fire and you live and you learn experience. 

PS I also struggle with extremes of heat and, especially, heat and humidity. In fact, one reason why I chose to live where I do (high Rocky Mountain Utah) is the (rather rarified) dry climate here. I can take the odd 90 degree (low humidity) summer day just fine, especially when I'm well hydrated and have a damp cooling rag nearby that I can wrap around my neck when I feel over heated. Heat combined with humidity, though, can wipe me out.

Sorry to hear you had such a disconcerting experience with the palpitations and such! Thank you for your comment, its nice to know I'm not alone   

51 minutes ago, ScottS said:

Most people living with POTS experience sometimes extreme swings or variations in both pulse rate and with respect to their blood pressure. For me, around 6:30 PM most days is the "witching hour". Like you, I'll become lethargic then and struggle with both my mental focus and overall sense of well being. So long as you're otherwise healthy, I wouldn't worry too much about whether or not your heart can take it. The heart is as tough and strong willed an organ as any in the human body. It is built to hold up and to keep going just fine even when the stupidest autonomic nervous system is confused as to how to properly keep pace with it.

Thank you so much for this, I feel much better! Hope you are coping well  

8 hours ago, Pistol said:

Unfortunately the temperature intolerance is one of my biggest problems. In the winter I cannot go for walks b/c of the cold which triggers my symptoms, and in the summer it is the same with the heat. So I stay mostly indoors in the extreme temps and exercise there but in spring and fall I start to walk outdoors daily, every day a little more. I also are unable to sweat ( which makes hot flashes - I am of that age - unbearable ). I constantly put on or take off my clothes as well and use cooling itmes in the summer. I find fans very effective. 

Im sorry to hear it is affecting you so much 😕 hoping you find a more permanent solution soon xx

On 3/9/2019 at 1:29 PM, edriscoll said:

I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows.  This gives me the option of getting warm quickly but cooling down quickly as well.  Some days are fine but I always need to be aware of overheating and be able to respond quickly.  If you are not sweating, you need to discuss that with your doctor right away.  Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important.  One item that I discovered that has been a life saver for me, especially in the summer months,  are cooling towels.  They are available online or in most sporting goods stores.  They are lightweight towels that come in different sizes.  They stay cool and can be worn around your neck (my fave), wrapped around your head like a bandana or just used to cool your face and wrists (pressure points).  There are also cooling vests that keep your core cool.  I haven't used one myself, but I have heard from several people that they work quite well. But again, if you are not sweating, please consult with your doctor.  Dressing in layers and taking precautions is important.  Temperature dysregulation is a common symptom and can be a distressful one.  But there are ways to handle it and it will get better.   

I love the sound of cooling towels! Thank you for your help  xx

On 3/8/2019 at 4:35 PM, WinterSown said:

A lot of dysautonomia patients have temp regulation problems. It's like the temperature dial only goes to high in either direction. I can't wear pressure socks because I overheat and can faint, but if I don't wear the pressure socks I can faint. No win there at all. It's winter and I'm in my office barefoot and wearing a summer shift. I also have a space heater going and aimed at my pelvis which is always hurting somewhere.  Remember the movie Annie Hall and she dressed in layers--this is what you need to do. I have all manner of vests, sweaters and leggings in different thickness/warmth. I hate the temperature swings especially sweating like rain. I had to be more flexible with myself and change my clothes as needed rather than wearing the same thing all day that I put on in the morning. Definitely talk about this with your doctor and try to find ways where you can be more comfortable.

 

Thanks for the advice, you have been very helpful xx

On 3/8/2019 at 3:58 PM, FileTrekker said:

Yeah, getting body temperature right is hard. I'm always either far too cold or boiling hot.

Same!

Hi again! Sorry to ask another question, its just I only get to see my doctor once every month and I keep on getting so many symptoms due to my POTs! I have found that at around 7pm every day I get incredibly tired and lethargic, and struggle to concentrate. I notice that when this happens my pulse is quite weak, when usually it is quite strong. My blood pressure varies often I was wondering if this is normal? I worry about how my pulse strength varies so much, so if anyone else suffers with this too please let me know! It would be hugely reassuring.

Many thanks, I hope you are all well xxxx 

6 hours ago, Pistol said:

@Meemee - I have hyper-POTS and also struggle with temperature intolerance and fluctuations. When it is cold outside ( I live in the north east ) I have to stay indoors or immediately turn freezing, with ice ocld feet and hands that are difficult to heat back up. If it is warm outside I can only tolerate a few minutes until I feel like passing out and need to go inside. Cooling supplies such as cooling packs or collars have been helpful in those times. I also do not usually sweat at all unless i am close to passing out or have hypoglycemia. My temperature also fluctuates and sometimes I feel exactly like I have a fever but I have no elevated temperature. Go figure! I have not yet found a way to improve this symptom except to avoid heat/ cold.

I suspect I have hyper-POTs also, its awful isn't it! Seems I have many of the same symptoms as you 😕 I hope you find a good way to cope with this, good luck!

1 hour ago, bombsh3ll said:

I too struggle with temperatures - I believe at least in my case it is due to low blood volume as I seem to sweat, vasoconstrict & vasodilate appropriately, however the mechanism can vary from person to person. 

I live in Scotland, UK, so feeling cold is commoner for me - however I do not tolerate heat so when family turn the heating on, I suffer. 

What I find best is to just warm the parts of me that are cold ie hands and feet rather than my whole body. 

These are the things that help me, some of these things look really geriatric, especially as you are young, but I love them;

For warming:

Hot water bottle with fluffy cover - for hands

Electric rechargeable Cookey hand warmer. 

Beurer plug in electric foot warmer.

Electric blanket on my bed.

For cooling:

Hand held fan

Ice pack (wrapped in cloth)

Spray bottle with water (this is really simple, cheap and portable and has staved off many a faint for me)

I hope you manage to find some relief.

B x 

 

Thanks for your response, you have been very helpful! I will make sure I give that a go, best wishes

9 hours ago, JimL said:

I guess it's not unusual for people with POTS? I have so much I have to do. I am a hands on person and take care of all the hands on stuff with the house and cars and then there is work. My boss is letting me work from home until surgery later this month for cervical fusion, but after that, if I haven't learned how to deal with this better, I have problems. 

It must be, good luck with your surgery!

10 minutes ago, JimL said:

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

Yes I really struggle when I cook dinner too! 

11 minutes ago, JimL said:

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

34 minutes ago, KiminOrlando said:

The inability to sweat is very significant here. Make sure your doctor hears this. They can test for this and it is diagnostically relevant. I think it is called the QSART test? It has been so long and my brain is foggy.

Did you use a thermometer to check your temperature or are you just going off of how you feel? If you feel chilled, but your body temp is normal, that is different than feeling cold and your body temp is low as well. I would suggest keeping a log of what triggered the feeling, temperatures outside and your body, how long to recover, etc, so your doctors can analyze the data and maybe help you. Good physicians like lots of data in my experience. 

Keeping a log is a good idea! I hear that the inability to sweat is not very treatable so a bit worried about that... many thanks!

16 minutes ago, RecipeForDisaster said:

I have this to quite a degree... pyridostigmine helps somewhat, but nothing else really has. I have a rechargeable heating pad on me now because I was so cold and couldn't warm up.

Ill suggest that to my doctor the next time I see him! Thank you

29 minutes ago, angelloz said:

At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill.  This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.

Im glad to hear you're not really struggling with this anymore  hopefully that will be the case for me! Did you ever find that attempting to heat up then suddenly made you too hot?

35 minutes ago, StayAtHomeMom said:

First I would start with talking to your doctor. They would have an idea about any medications may help. 

Second I have a hard time with extreme heat. Summers are brutal. In fact last summer there was a discussion about cooling your feet to cool off the rest of your body. Have you tried something similar to that?

Finding the triggers and avoiding or minimizing them can help you deal with your body issues. And most symptoms cycle. So just because this is your worse symptom now doesn't mean it still will be in 6 months. Try treating your body like a science experiment. Introduce things one at a time to see what helps and what doesn't. It is different for everyone. 

Thanks for your response! I have another appointment in two weeks, so hopefully he can help me then  sorry to hear that you are struggling with this issue too,  I will give cooling my feet a go! 

Hi! I have exactly these symptoms too! I understand how scary it is, just keep on persevering with the doctors until you find one that can give you a proper diagnosis and treatment plan. It seems impossible to find one but hang in there, you can do this

Hi! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness.

Thank you!!

Hi! Not sure if this is the right forum to post on as I am new here! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness.

Thank you!!

p.s just realized that this is the wrong forum, not sure how to fix this so hope you dont mind!