abnel

I wear an excellent cooling vest which is great for the summer heat. It is made by Artic Heat which I believe may also have distributes in the US. Their website is www.arcticheat.com.au. It does not look as nice as the 'Cool Vest' brand, but I have personally found their customer service much better as Cool Vest. If anyone knows of other international distributers could they please post the link? PS. I got a discount because I was referred to them through Multiple Sclerosis Society of Australia, even though I don't have MS.

Thank you so much for your responses everyone. Only the DINET family can truly understand what this is like and how hard it is for us. Thank you Julie and Victoria for the kind words. Songcanary, your story reads like my story, set on a career path doing a job I loved that it very rewarding but high pressure at times. I am so pleased to hear the break did you good and that you have been able to return to do some part time work. There is hope in your story and I will keep it in my heart. Best wishes, I hope it goes well for you.

For the first 18 months my symptoms were consistently at their worst betwen 10am-2pm every day with increased tachy around lunchtime. I was usually quite good first thing in the morning but as the day wore on I started to feel worse and worse. Now the mornings seem to be worse - often quite tachy. Lunchtimes still aren't great but not as bad as before. On a bad day I am bad all day until evening. Evenings/late afternoon are always best time of day for me.

I quit my job the other day after months of increasing pressure. I was completing all of my work competently, but because I wasn't working the full hours that they wanted me to, my employer insisted on meetings to discuss this and my health issues. By the end I was filled with trepidation at the thought of coming to work. I couldn't stand the physical environment either as the temperature was too variable and the building had a constantly bad odour from the business nearby. By the time I quit, just getting from my car and across the busy intersection was a major accomplishment. So I guess I am looking for some reassurance from any of you who have been there, done that, and am hoping you might have some good news stories you can share that you eventually succeeded in returning to the workforce. What did you do initially after quitting? Did you take time off or look for work immediately? Did your health improve at all after quitting? I am struggling to come to terms with my decision. It is so hard when you have struggled with a job because of POTS but managed to press on in spite of it, only to have to concede eventually that it's no longer the right thing. Grateful for any experiences you are willing to share.

I just started wearing Mediven sheer and soft when I feel I need the extra help. I ordered these online from Brightlife . They are a bit more expensive but have been good so far and actually seem to have given me more time on my feet. So far I have tried 15-20mmHg which probably isn't enough, and 20-30mmHg which is definitely better. I also started wearning sports compression pants for my walks which I purchased online from wiggle.co.uk. The compression from these is quite strong but really good. I can't wear them for too long though as once I stop exercising it makes me feel like I am having high blood pressure. I find the mediven sizing really good for me and perfect for my small size and stature.

I am not 100% sure, as this is all new to me too, but I think that until you notice some of the big improvements that Florinef is meant to help with (ie, dizziness, HR, blood pressure) you need to keep trying to titrate up slowly each week until you notice those improvements while at the same time not exceeding the dose prescribed. If you get worse on the higher dose, then you need to back off and probably consult your doctor. I was also hoping I wouldn't get the classic headache but was willing to try anything and did exactly what the doctor said and went up to 0.2mg within a week and a half, and got the classic Florinef headache. But it went away immediately as soon as I stopped taking Florinef. It wasn't the worst headache I've ever had but it could have gotten a lot worse if I'd persisted with the 0.2mg. During the time I was on the 0.2mg I noticed my resting and exercise HR was much more settled and my orthostatic tolerance increased, I didn't feel I was going to pass out nearly as much. The things it didn't help me with were breathless particularly during exercise and the giddiness. I am currently up to 0.1mg. My dizziness and pre-syncope feeling is much improved, my resting HR is a little improved but I seem to be getting spikes in HR during exercise. On the down side, Florinef hasn't helped my breathing issues at all, which is my most debilitating symptom at times. Good luck and I hope you see some improvements over time.

I am also relatively new to Florinef - have been taking it for around 6 weeks on and off now. The first time I got a massive headache on 0.2mg, and was told to come off it immediately. I had a horrible POTS flare-up for the next 7 days until I started taking it again, heart rate was very elevated, but headache went away. I am now on 0.1mg and have similar fears to you; ie; will I ever be able to come off it again? How long do I need to take it? So far it has helped a lot with the dizziness and pre-syncope I was experiencing around the middle of the day, but hasn't really helped with my shortness of breath, etc. I may also be responsible for some heart rate spikes. You also need to keep an eye on your potassium levels. Mine got a bit low and for a week I was very anxious and HR was quite elevated. Since taking potassium tablets the huge anxiety and ticky heart seem to have calmed down a bit. Good luck and it would be good to compare notes in say 4-5 weeks time to see if it's helping.

Thanks everyone for sharing your thoughts and confirming we're not alone in feeling this way. I agree that dealing with stress is so much harder for us than just 'blocking' the negativity from our lives - if only it was that easy. While I'm still not very good at dealing with acute episodes of stress, one thing that has probably helped me long term is to simplify my life as much as possible and only do what really needs to be done emotionally, physically, spiritually. I sometimes feel as if I am living the life of a monk and it can be a lonely path to tread, but necessary. I hope you get some quality time to yourself Lieze to rest and recuperate. I can only imagine how hard this must be due to the demands on your energy coming from your kids and your husband. Sending healing thoughts your way...

I love reading everyone's updates regarding how they are doing with the protocol. Please keep them coming when you can, and thanks for sharing with us all.

I forgot to mention something else that works with that chest compression feeling - on occasion I hang in a doorway with both arms outstretched (like superwoman), suck your stomach in and lean into the doorway at an angle. It seems to alleviate some of the pressure in the chest cavity. I don't know why it works, but was recommended to me by an osteopath. You need to aim to hold the position for 10-20seconds. I usually only manage 10 at the most. Mabye not for all, but might help some...

Hi Lieze, I really feel for you as I have something a bit similar but maybe not as severe. Any time something fairly stressful happens in my life, I get the tachy you describe, except rather than describing it as a chest crushing feeling I would describe it as a chest compression feeling that makes me feel incredibly weak in the core of my body. When I first got sick I would get this feeling at the slightest angry feeling (eg. even if someone cut me off at traffic lights!). I couldn't even have a normal argument with my husband without getting this, so I was a complete pushover and just let things slip by as I was too weak to argue. Now after the passage of time, my threshold for stress has increased a bit thankfully and it takes more for me to get this feeling, except when I am having a POTS flare up. I have been having work issues lately that make me incredibly stressed, and that same awful chest compression, weakness came over me with increased tachy. The only thing that seems to help is to take Hawthorn tea which for me calms my palpitations, but doesn't get rid of the residual chest weakness and the anxiety which can last for hours after sometimes. I hope you can find something that works for you soon.

Also, I am seeing a pattern start to form with the severity of my symptoms. It seems as long as I leave myself alone meaning not trying any new drugs, supplements, herbs, etc. My body seems to regulate itself a bit. For example, I had an acupressure massage on Wednesday and could hardly stand up on Thursday (yesterday). I was VERY weak, tachy, etc. Then last night I had a major anxiety attack or "surge" as I like to call them. I am so upset since less than two weeks ago I was up and atem everyday and running a few errands and now I'm back in bed trying to recover from this setback. Should I just quit trying and leave my body alone? Thanks for your input, Ashley Hi Ashley, I just wanted to chime in and say I also see an Accupressurist for my stomach issues (which helps increadibly - more effective than any med incidentally), however, he sometimes lowers my heart rate too much and I feel quite dizzy afterwards, probably because he's also lowered my blood pressure. Lowering the HR when I first got sick was great and made me feel so much better as I had bad sinus tachycardia the whole time, but now my tachy isn't so bad it's sometimes really problematic. I also saw a physio last year who was really helping me until he did something to my back. I had been having a few fantastic weeks up until that point and then bang, I went back to being very tachy. Took me weeks to recover. I haven't given up on all the alternative treatments yet as they all seem to help, but at the same time I, like you, get a bit down hearted when they cause flare ups. I wouldn't give up just yet on accupressure unless it continues to trouble you week afer week and you are feeling no benefit.

I thought the suggestion to use a fan seemed rather obvious as it was something I have been doing intuitively since Day 1. I suppose it's somewhat interesting that they think they have found a scientific basis as to why it works. Who knows? Something more might come of this oneday.. I hear you loud and clear about the need for drugs, but unfortunately as far as I'm concerned no doctor is prepared to medicate me specifically for the breathing issue, and certainly won't prescribe Mestinon until I've tried the other first lines of treatment like Florinef and Midodrine. Are you serious about the ice on the neck, abdomen, etc, or was that just tongue in cheek?

I came across this article about how to reduce breathlessness using a fan that circulates cool moving air. The theory is that cool air activates the nerves in the face, prompting the body to conserve oxygen. http://www.dailymail.co.uk/health/article-1378224/Could-gust-cool-air-ease-breathlessness.html I've been using a fan on my face whenever I get into serious breathing difficulty and have found it to be the most effective non-pharmacological measure so far. Unfortunately it doesn't make the breathing issue go away, but gives me a bit of relief. I might also try the cold compress on the face to see if that helps too. I'd be interested to see whether this helps anyone else and what other non-pharmacological measures you guys take for chronic breathlessness.

Hello and so sorry to hear about your 10 year ordeal. What you just said about your heart rate spiking from 60-75 at rest and then to 130-145 sounds like POTS, especially if it settles at 110 which is more than 30BPM higher than at rest. I am not sure where you live, (sounds like the US?) but can I suggest trying to get a referral from your doctor to one of the specialists listed on this website or someone people have previously posted about and recommended. Not sure about the US, but where I live a General Practitioner cannot refuse a patient a request for a referral to a specialist. I would think the same applies elsewhere and you cannot be denied such a request, even where the General Practitioner regards the referral as unnecessary. The specialist would then hopefully refer you for a tilt table test. From experience, and many other's here on the forum, it is so important to see someone who actually has an interest in this condition. Most doctors have not even heard of it and others dismiss it as Chronic Fatigue Syndrome or ME/CFS. While there is some overlap, I am not convinced it the same thing and I think it is treated somewhat differently by specialists who have an interest in Orthostatic Intolerance. While you may have ME/CFS, you might also have orthostatic intolerance and that can be treated differently to ME/CFS, which from experience seems to be treated more on the premise that the condition arises from a gut dysbiosis. Yes you're right that this syndrome is another not easily explained syndrome, but I suspect there is more research being done into it than, for example, ME/CFS. I think everyone on this forum is hoping that one day there will be a breakthrough and researchers will find one unifying factor that explains the constellation of symptoms that is POTS.

Thanks Issie. I am taking extra potassium now but it doesn't seem to be helping yet, (still early days). I'm told it can take up to a week for potassium to build in your system. Fingers crossed this was the culprit causing my problems. If not, maybe Florinef or just a POTS flare.

Hi Northerndarlene, I also have floaters in both eyes and have had them for years, starting from my early 20s. It is very annoying at times, especially on a clear summer's day when your vision of the sky is interfered with by black dots! I am also 36, but I have to say having had them for this long, they haven't actually gotten worse. Apparently floaters are fairly common in POTS patients. I don't think they present any danger to your eye health (please correct me if I'm wrong!) but they are just as you say very annoying at times.

I know exactly how you feel. I am still grieving for the person I once was (I was only diagnosed last August but was symptomatic for a year beforehand). I, like you, also had heaps of energy, was able to do 3-4 hours of heavy gardening a day, went out with my friends at night after work and on weekends, drove all over the place, travelled overseas a lot, etc. I have also had to withdraw quite a lot from the social side of life, all the travel that I love, etc, which has been so hard, especially missing out on special events and family occasions. Like you, the thought also crossed my mind that when I was at my very worst, if it hadn't have been for my husband I might have had to go to a nursing home. But having read other posts on this site I know there are others who have suffered far greater trials than I have, yet somehow have managed to dig deep within themselves to find the strength to keep going, no matter how hard things got. I aspire to be like them, they are my 'role models' and I take courage from their strength of character and resilience.

How frustrating for you with the mast cell triggers. I will definitely check out the summary you posted on the Mastocyosis Canada site. It's probably time I looked into this as a possible mechanism causing my POTS. It's just taken me so long to even find a doctor willing to treat my POTS, let alone find anyone willing to look into possible underlying mechanisms. All the best with the meds and I hope they continue to have a positive effect and you continue to improve.

Hi Clover, lovely to hear from you. I can really relate to a lot of what you are saying. When I was at my worst being supine also made me feel worse and I used to dread going to sleep at night because of the dizziness/giddiness on lying down and the increased tachycardia. I used to feel much better standing and walking around and exercise made me feel almost normal, but once I stopped the symptoms would all come back. Now my POTS has changed and I am definitely worse standing up and sometimes feel worse on exercising. But on the positive side I feel better on sitting and lying down which is a relief because I have a sedentery job. Good luck with your appointment on 10th May and hopefully they'll give you some good advice and direction.

Just curious.... are there any doctors out there who investigate the underlying mechanism, such as what you mentioned above, before prescribing medication or is medication normally administered using a 'trial and error' approach? From there does the doctor/patient 'guess' what the underlying mechanism is?

Hi Sarah, my anxiety is also much worse since staying on Florinef. I think you mentioned in a previous post that you were thinking of trying it again. Did you decide to go back on it and if so how are you going with it?

I started Florinef over a month ago and titrated up to .2 mg very quickly within a week (as instructed by doctor) but ended up with the classic headache. Was told to go off them cold turkey for a week to see if the headache and dosage related. Ofcourse it did, and the headache went away immediately but I had a horrible POTS flare up for a week until I started back on the Florinef. I am now back up to Florinef 0.1 mg and slowly trying to titrate up to full dosage, but ended up in Emergency last Sunday because of severe breathing issues. They couldn't find anything except lower than normal potassium levels (3.1). One doctor seems to think low potassium can cause the HR spikes I have been having (had my heart doing 160BPM the other day just walking up a hill which isn't that hard) and laboured breathing and swallowing difficulties. Has anyone else experienced this with low potassium levels?

I just started taking Florinef over a month ago and I went up to .2mg in a week, felt pretty good on the .2mg and then, bang, the headache began. My doctor told me to go off it cold turkey and I then had one of the most awful potsy weeks I'd had in ages, with heart surges, dizziness, etc. I just started back on it and am up to .1mg. I think it may have helped lower my resting HR, especially in the afternoon and at night, but I am having worse heart rate surges in the morning and during exercise, which is causing increased anxiety. Do you know if your son's anxiety is related to any unpleasant physical symptoms associated with the florinef or is it just happening on its own?

I wish I knew what could help because I also suffer from sensitivities to perfumes, car fumes, general pollution, wood burning, etc, etc. I am just managing to hold onto a job in the city and there are many days where getting from the car park to my office is as much as I can bear due to the awful assault on my senses once I leave the car park - from cigarette smoke, to car fumes, etc. I arrive at my desk feeling like I am about to collapse from the palpitations, shortness of breath, etc. Being in a confined space with someone who is wearing perfume is just awful.