Heat Intolerance To The Extreme-Suggestions?

[Kris4444]

Hi,

I have had great improvement in many of my issues after starting Humira. One issue that has not gone away is the way my body is unable to thermoregulate. Not only with heat but cold and back and forth.

Yesterday we had our first hot day here. I had a lesson with my trainer on my horse. I have been riding 3x's a week for the past 3 months and plan to go to shows for the first time in 6 years. Riding and training horses had been my life, my career until this illness began. It is still my passion. Things were going great in the cool weather but yesterday it got really bad.

I've been having problems in the beginning of my rides with my breathing. This does seem to get better as the ride goes on but yesterday in the heat it never got better. I could not catch my breath and had to keep stopping. My trainer was very patient with me. My mouth turned to paste and my lips literally turned white with sticky yuck. I overheated yet I was covered in goosebumps and had the chills. I was extremly light headed and felt very foggy and far away. When I got down my flushing took over and I got a terrible headache. I felt drowsy, almost drunk and was afraid to drive home. My muscles were not cooperating with what I was asking while riding and after riding they were extremely tired and sore.

I do have a cooling vest that I wear in the summer months and I do think that it helps. I didn't wear it yesterday because I wanted to see what would happen now that I'm off of so much of the medication. I was really hoping that it had improved but it obviously hasn't. Yesterday I felt like I was having an emergency. What can I do to keep this from happening and still be able to enjoy the sport I love?

Any suggestions would be great. I realize how self centered I sound being that some of you aren't able to get out of be let alone ride a horse. Please forgive me.

-Kris

[sue1234]

I have the same issue. I haven't found a fix for it either.

[Kris4444]

I see you have a HyperPOTS diagnosis too.....I don't understand how this can't be controlled somehow. I used to work outside ALL day in the heat and cold. Now I can't ride my horse for an hour without feeling like I'm literally going to die. Yet I can run on my elliptical in my nice cool basement for 7 miles and feel fine. I don't understand and I refuse to give up on my goals. Someone has to know something about how to fix this or at least make it tolerable.

[Raisin]

Hi Kris! I am unsure but I know that after I had a thermoregulatory sweat test, I learned that I don't sweat appropriately at all. I think this has been a problem even before I felt very Ill and doesn't seem to improve for me being on the meds. I was actually going to check now into a cooling vest. Can you continue to wear the cooling vest while riding? I ask because I truly believe that for me it is a safety issue as last summer I think I had a small heat stroke and was unable to use my left leg for a few days. That was scary and I understand what you mean about it feeling like a true emergency. All I could think was "oh ohhhhh..." I am not trying to scare you of course, I am just thinking that we need to take the heat seriously. Best of luck and safety first!

[Kris4444]

Hi Raisin,

Yes I can wear the cooling vest when I ride. They even have ones in white to wear when I show. It just amazes me how quickly it comes on. My mind was telling my body what to do but my muscles were unable to do what they were told. That was the scariest part. This has happened before. I used to ride a bunch of horses a day in hot and cold weather. I could understand if I had been riding outside with the sun blazing down on me but we were in an indoor arena, there was a nice breeze and I rode for a little over an hour...

I had the thermoregulatory sweat test at Mayo too but I'm the opposite, I sweat profusely. Yesterday I had soaked through my clothes. Mayo's suggestions for me was to use clonidine and exercise/ride in a wet shirt. The clonidine had side effects that I didn't care for so I stopped it and the cooling vest serves the purpose of the wet shirt.

[artluvr09]

I have heat intolerance as well. I was at church last Sunday and we were in the cafeteria having dinner after the photo scavenger hunt and I was so hot my face was bright red. it was nicea nd cool out but hot in the café. I had to leave and stand outside for a few minutes! Have you ever thought of carrying a portable sprits fan thing? I have a spritzer tha has a battery operated fan on it. also if its that hot I carry around a little portale table fan if you are going to be with power outlets.

[Kris4444]

My issue is related more to exercise. My body goes to extremes. I overheat and then upon cooling I get too cold,

My goal is to compete my horse this summer. I'm a dressage rider and our workouts are very intense. The temperature outside plays a huge role. If it's hot I over heat but to the extreme. Dizziness, muscle weakness, vertigo, can't make saliva. Then terrible headache. This all happens suddenly.

[looneymom]

Hi Chris,

Have you seen the ties that you wet down and tie around your neck. Tyler has used these in the summer time. I have always been able to fine them in the sporting goods department at Walmart. They are something that hiker use. Don't know it his would help any. Tyler likes to use them in the summer time. I'm looking into a cooling vest for him. Is there a good place online to order one that's reasonable and good quality?

[TCP]

I know this feeling only too well and I'm in no way active at all. My torso overheats and my limbs go cold as the circulation closes down in them. I think you need to wear that cooling vest in warmer weather. I used mine last summer and it really helped. I don't know how you can regulate things and all I am taking is a beta blocker for BP and HR issues. I find most of the time lying down is the only way I can get everything to settle down once more.

[TCP]

I hate the red face thing if I overheat and people think I look well and I feel like I'm going to explode.

[Kris4444]

It made a difference wearing the vest on Sunday. Last night was cool so I went without and did ok. I have had several people tell me to use Magnesium as a supplement to help so I have started taking that as well as drinking Gatorade before I ride. I wish there was more that I can do. It's amazing how this can really disrupt your life...

[Loulou]

Hi, you said you were told to use magnesium as a supplement. Is it suppose to help with the heat intolerance? I'm like you, mine comes on so fast that I do not have time to make adjustments to counter it. I'm in Florida and it has been hot awhile here. I have found that some days I do okay with the heat and others are crazy and scary like your experience. If I find anything that helps I will post right away.

[xRobin]

Glad the vest is helping!

I'm not sure how it would work with a trainer and horse, but on a hot day, could you break your training into smaller paced sessions? Like, do 20 minutes, take 5 and go cool off? Does your stable have A/C or a fridge you can stand in front of, or can you put your feet in a bucket of cool water or run cold water over your wrists? I'm just thinking that cooling yourself down frequently can stave off an overheating episode.

I read an article about an athlete using a cooling sleeve a long time ago, and I think this is it ------> http://www.avacore.com/ Very expensive but awesome idea!

That sounds very scary to be on a horse and have en episode like that. But, kudos to you for not letting it stop your riding. Your horse is super cute and hope you can do your shows this year!

[Kris4444]

Hi Loulou,

Yes the magnesium is supposed to help. I'm taking it twice a day. It's been relatively cool here lately so I don't know if it's helping but I've been doing fine.

Robin I do take breaks in between while riding and definitely keep things shorter on hotter days. I will check out the sleeve. Thanks for the link!

[kitt]

.

[Kris4444]

Hi Kitt,

I'm sorry you can't ride. I feel terrible just talking about it when there are people struggling so much more than I am but I'm excited at my progress. I never thought I would ever show again but I have my first show in 6 years on the 28th of this month! It's been unseasonably cool around here lately but of course that day we will have heat indexes into the 100's I'm sure. Never fails!!

Why am I on the Humira...well, I have a lot of autoimmune issues. Originally I was diagnosed with Scleroderma but I saw the top specialist at Johns Hopkins and he said that is NOT what I have. I also have symptoms of Lupus and Sjogren's. That still is NOT why I'm on the Humira.

For years I have struggled with inflammation. I have DDD and have had back surgery, my bladder has chronic inflammation, kidneys, thyroid, GI system...my doctor feels that I have a systemic inflammatory disease of unknown name but autoimmune in nature. He did an ultrasound of my hand and found the beginning of RA and started me on the Humira. I could not get over how different my hands looked and felt once I started taking it. I had so much swelling, who knew! And not just my hands, ALL OVER! My doctor has always felt that this was a rheumatological disease and RA can cause a lot of the problems I was having. I'm not a classic RA case though, I'm different, but the Humira is working.

For the past few years I had continued to gain weight despite diet, exercise and even meeting with a nutritionist and logging every morsel I put in my mouth. I could not lose. My doctor felt this too had to do with this inflammatory disease of mine. He thought that trying the Humira might prove to be beneficial on MANY levels and he was right! Since starting it I have lost 30 pounds. I do feel it has helped my flushing too although I can't tell you why. I still flush occasionally but not like I had. Alcohol used to cause it every time and now I can have a glass of wine and nothing happens.

The clonidine did a lot of bad things to me. It made me very tired. I used to take it before work in the morning and was finding myself nearly falling asleep at the wheel! I believe it was part of my weight gain too. There were other side effects that I can't remember off the top of my head but getting off of it was a huge relief.

Keep in mind that I was on a TON of medication and I took myself off of many of them with my doctor's approval before getting on the Humira. It is possible that some of the medications were actually contributing to my flushing although I flushed before starting any of them. All I know is that I have chronic inflammation that doesn't always show up on blood work and that the Humira made that much better and I am feeling better than I have in years because of this drug.

I still overheat and flush from exercise. If I overdo it then the vertigo kicks in but even that seems to subside more quickly now.

How would I get injections of magnesium? Someone else mentioned injections of b-12 as well.

I do stay super hydrated but I don't do the salt loading. I wonder if that would help? I get super swollen from too much salt and so I'm hesitant to try that. I try to remember to drink gatorade on the days I ride.

I do have the neck wrap, it's actually made for showing so it's pretty cool. We have an indoor arena where I keep my horse and it definitely helps on the super hot days to stay out of the sun. No a/c though.

I AM doing this! It's already in the works and paid for so no excuses for me! I am super excited and a little scared too. I try to keep telling myself it's only around 6 minutes that I have to get through in the show ring, I can do this! I've been trailering my horse in for lessons with my trainer who works me really hard and I've been tolerating it. I feel better than I have in years. I have no idea why the Humira has helped on so many levels but I'm so thankful that it has. The only thing that I can say negatively is that it wears off after about a week. (I do an injection every other week) so the second week my fatigue kicks in and I can't wait for Saturday to roll around so I can get my injection.

I hope Mayo gets you some answers. It's been a long haul and I'd love to hear something positive for you. If they are considering Humira, you will have to have a reason that your insurance will approve of, like my RA diagnosis. The shots are super expensive and without insurance I could not pay for them. Hang in there and keep me posted!

-Kris

[kitt]

Kris,

Thanks for sharing about Humira. Am so glad it's helping. You've come a long way. Didn't Mayo tell you that you were in a hyperadrenergic state but said you didn't have pots? I remember that.

The inflammation makes a LOT of sense. Is it a rheumatologist that is prescribing Humira? It sounds like that's the area you fall in? Have you researched foods that cause inflammation? It's helpful.

I did get a LOT of information from Mayo MN. They insisted I get the sleep issue resolved before starting new meds, so that's next.

Prior to Mayo my cardiologist here is very knowledgeable about dysautonomia, and I feel I've tried everything under the sun...Probably a dozen different meds. All made things worse. They either caused too much fatigue (like Clonodine) or a massive drop in BP like beta blockers, or neuro issues (Mestinon) and on and on.

Dr. Sandroni at Mayo talked about a few meds I'd never heard of so am hoping she'll have some good ideas. She 'gets' the weight gain concern and completely understands that thats an issue that most of us don't want to deal with. I'm petite, small- boned and can't carry extra weight like some women. So am hoping she'll have a plan.

I've had good luck with Gabapentin also known as Neurontin. Psalms had suggested it as it helped her with several issues and my cardiologist agreed. It helps with pain, sleep, and even headaches. Am grateful for it, but it doesn't do anything for pulse or BP. My pulse goes up to 135 in my first ten minutes of standing and then starts to drop quickly dues to having neurocardiogenic syncope, and it will quickly drop to 50. At that point I'm dizzy for hours and have to sit. Crazy. Mayo recommended a pacemaker but studies show that they don't always work because of blood pooling in the legs. Because I don't faint that often I'm holding off on the pacemaker for now.

Otherwise I've been off all pots meds since December. When you go to Mayo, you need to be off all meds for testing, (I know you know that, but for people who might read this it's an fyi)

Btw, what kind of horse do you ride and what kind of show is it? I love gaited horses Have you ever been to a Paso Fino show? It's pretty amazing...The costumes and the way pasos move. I just don't have the strength to post anymore so pasos are perfect for me. Also, they're small horses which I love and very sure footed.

You're very fortunate to be able to work and ride. I know of two other horse lovers on Dinet, and I'm rooting for you! It's a blessing to be able to follow your passion. Blessed be you!

As for the magnesium intramuscular shots, I'm not sure what doctor would prescribe. An internist, a naturopathic doctor for sure....Really anyone can prescribe if they're willing. They just need to look up the dose. It's a big needle, and I usually injected into my thigh. Leaves a bruise, but it was so worth it. Gave me a lot of energy. I need to get someone to prescribe again. I also did Vit- B12 shots which is a piece of cake...little insulin needle, and I also gave myself shots of Kutapressin. All three together worked synergistically. I think a naturopathic doctor would be the best bet for the mag and B-12 prescriptions. Not sure Kutapressin would apply to you. You can inject the B-12 every few days. It does boost energy! Inject in your belly. It's NO biggy. Easy. Intramuscular shots takes getting used to. Very big needle, but it's worth it.

Start on an oral mag for now at least and get the one with calcium in it. Be careful to buy at a good health store or Whole Foods, and not at Costco or a drug store. You want ot be sure the minerals are sourced from the U.S.

Happy Trails!

K

[Kris4444]

Hi,

Yes they said I had a hyperadrenergic state but not POTS.

Yes the Rheumy prescribes the Humira. I will ask him about injections of B-12 and magnesium. I had just sent him an email yesterday regarding taking Humira once a week instead of once every two because of the fatigue that hits so hard the second week. Sad thing is, that's how I felt all the time. To be able to have a whole week where I feel like myself is just amazing.

My horse is a German Oldenburg. His father is Sandro Hit. If you google him you will see he's a big deal. I bought this horse as a 2 year old, broke and trained him myself. I was a professional trainer at the time and I planned on marketing my business by showing my horse. Unfortunately we only had one show season when I got hit with this lovely disease(s). It hit hard and I was very disabled for a very long time. I've been away from teaching and training for 6 years now! It's time to come back!

I am fortunate to work and ride. I didn't do either for a long time. I went through a divorce through all of this too so I had no choice but to work. It's been tough.

I will look into everything you mentioned! Thanks for all the support and encouragement! Sure hope you get some good answers and start feeling better soon!

-Kris

I have ridden a Paso Fino but have never been to a show. They are amazingly comfortable! We had one that boarded with us at a barn that I worked at and it was neat to watch him go, their little feet seem to be going 100 mph!

[Loulou]

Hi Kris,

Thanks for the info about magnesium. I spoke to my sister who was around horses a lot before her back injury. She said they used a lot of high powered fans. It might not help during shows but maybe you can use them when your training.

[Kris4444]

Hi Loulou,

We have fans but not in the arena where I need them most.

[DeGenesis]

Mmm.. I know your case is super-complicated but try and pin down some solid diagnoses for your autoimmune disorders. There are a lot of new drugs coming down the pipeline treating diseases dominated by T cell involvement, some with B cells.. In the mean time I'm glad Humira is working for you, but TNF-a is by no means the whole picture.

It's times like these I wish we had rituximab..

[Kris4444]

DeGenesis,

I have been to Johns Hopkins as well as Mayo clinic. My rhuematologist believes that I have a systemic inflammatory disease which is autoimmune in nature and unique onto me. Lucky girl huh? He believes it's in the rheumatism family and the Humira is to treat RA but my inflammation issues aren't only in my joints, they are also in various organs. UCTD is my current diagnosis I guess but my doctor says we will never pin down what this actually is. The fact that we can now TREAT it and get relief is a blessing. I no longer care what we call it, just as long as I get relief!