dancer65

I am considering getting these to help with my sensitivity to lights as sunshine which can often set off eye migraine. Does anyone use them and if so do they help? Thanks in advance

Well done for giving up pistol! Your absoultly right you have to want it to succeed . I know there is part of me that really enjoys smoking and that's what I need to get over in order to give up . My husband gave uo cold turkey but says he still craves one every now and then.

I will look into it thanks so much for the information x

No I haven't tried it . I am hoping I will do better this time mentally and physically I am in a better place and we had a awful lot of stress and upset at the time I gave up, I am telling myself if I could stop for 18 months when all that was going on I can do it now things are better ! I have cut down even more this last few weeks ant psyching myself up for the first day ! Thanks foe encouragement , now if it was food or alcohol I had to give up it would be no problem 😁

I hate to admit I am a smoker, triumphed a few times in giving up only to start again ,I hate the smell I don't smoke indoors I am now a light smoker since my last attempt to give up lasted 18 months using an e cigarette. I will admit I really am addicted and if you decide to start using nicotine products I would seriously think about the fact only a very small percentage of people give up forever it is highly addictive I found both gum and e cigarettes exasperated gum issues more than smoking itself and some of the vapour really gave me bad breath (sorry if tmi!) Some of the vapours smell really strong too. Be careful too which liquids you buy many of them have terrible chemicals in them,I read somewhere some of these chemicals are used in antifreeze. Whilst nicotine does raise BP it also can raise HR something to consider if you have tachycardia . Also proven nicotine exasperates anxiety, so smokers like myself who say I need a cig I'm stressed actually are making it worse ! I couldn't use patches they gave me really bad rashes which took a week to go down and drove me mad itching Lastly consider if you use any nicotine products you have to declare it to your life insurance company well you do here in uk , that's adds what they call loading to your policy by 50 percent ! I am not judging anyone for what they choose to do ,I just wanted to share my experiences , bottom line for me is I wish I had never lit my first cigarette and I will be attempting yet again to give up

Thank you defiantly going to give this a try !

Thank you so much for responding ! Your post is very interesting to me before I got a diagnosis I use to rely on flu plus and sudfed to get me through the really bad days I have always drunk loads of instant coffee (too much proper coffee makes me dithery!).I also take antihistamines due to allergies but I take them at night as they make me drowsy, that's helpful for sleeping My BP has always been low but huge improvement on midodrine and although I get tachycardia it's not until it's over 130 that I feel it Nice to know others are experiencing same reactions , I will give the L citrulline a try , does it make any difference what time you take it in relation to your exercise regime ? Again thank you for sharing

Hi firewater Have you found the L Cittruling helpful in preventing muscle pain after exercise . I am back to a new term of my dancing school, a busy term as we are preparing for our annual show and I am dancing with the kids every night for a good three hours ,plus all my prep beforehand ahhhh my poor body I couldn't even sit still last night it hurt so much ! If I keep moving around it helps . So frustrating I feel I need to rest to recover. Green that sounds so like me , I know by Saturday I will be exhausted but I need to work !

Music always inspires me I have my motivation tunes !

Glad it was helpful ! Also pleased you are feeling better I don’t do well in heat 70 is just about manageable for me ! Keep well

Yes midodrine is vasoconstrictor it helped with standing once I got up to 7.5mg but it has taken a good 8 months before I started to see improvements in my ability to exercise . I have worked really hard on my sleep where I was only getting a couple of hours I now get 6 to 7 although I still wake up to visit the bathroom at least once but I do go back to sleep. This improvement has helped with migraines and coat hanger pain mainly and although I still have loads of other problems I can cope with them , think what I'm trying to say that everything is linked to each other ! Oh yes I defiantly get a high when I am teaching my classes and if I get carried away I feel like I have flu the next day, it is hard when you feel good to stop I think that's the endorphins and addrellin .I was also trained to think if I'm not exhausted after ballet class I am not working hard enough , it's been difficult to retrain my thoughts on my good days. I also get warning signs to slow down ,cramp and a heavy feeling in the muscles as if there is no energy.especially my arms . Of course ballet is very anaerobic and I think that's where the problem lies for me , I can do a long brisk walk can't jog or jump around though! I am starting this week to start step again but I shall go slowly and see how that goes ! There is a lot of info about on this subject on CFS / ME forums. I just wanted to add I also notice a pattern if I feel fatigued a gentle mobility and stretching routine can make me feel better enough to tackle the evening meal or take a shower. For me resting too much makes me worse and drops my BP so I move about every hour , can take some determination when I'm feeling crappy though! Sorry for the long rabble but I hope it's useful in some way!

Hi green I don't know if this is helpful at all , I have CFS VVS and POTS exercise intolerance ,post exercise malaise was one of my most difficult symptoms due to my job. Although I still suffer with muscle joint pain and fatigue it is manageable! I found keeping a very close watch on my heart rate so it doesn't exceed 115 has helped . This includes all daily activities so if I wake up and HR is high I know I have to have a very quiet day and plan what I am doing very carefully . On those days I still exercise but it tends to be slow controlled movements. It has taken four years for me to be able to even exercise as what I would say is half of what I use to do but I stay positive I will get there eventually I also found Epsom salt bath good and I take magnesium and Q enzyme 10. I believe midodrine has helped me recover too I have low BP Truely hope you can find a solution that works , it is all so frustrating !

Yes I have been in this difficult situation it defiantly exasperated my POTS especially the anxiety, addrellin and high heart rate , which at one point was 125 in bed at night for hours for weeks on end . I was a carer with my parent having signs of dementia that other family members would not believe . I am no longer a carer but other issues are still going on and if I could turn back the clock I would do things very differently but hindsight is a great thing ! My advice would be to put yourself first along with your marriage , I didn't and I am lucky that I am only paying the price with my health not my marriage however the decline in health affects my husbands quality of life . I am extremely lucky my husband has been wonderful throughout the whole saga he is so unjudgemental ! This sounds very selfish but actually taking care of yourself needs to be priority IMO!

He is a very compassionate Dr I hope your appointment goes well !

I went to Dr Gupta heat health weekend in York last April, it was extremely interesting and although a long journey for us (which we did over two days )I will be attending the next one . His colleague a gastrenologist also spoke, very interesting how it gastrointestinal heart relate to each other, I learnt a lot even my hubby wants to attend again .

At my worst I couldn't put a sentence together , I couldnt comprehend what people were saying and my surroundings felf fuzzy not real (I know that sounds weird)even now I'm better my husband will often take a knife of me when I'm preparing dinner because my coordination is off, I often forget conversations we have had too. These days it tends to be evenings I have brain fog. I have a lot of vision disturbances as well. I often can't correlate my feeling ill with low BP or high HR, it seems to be when my fatigue is bad I hope all goes well for you in September

Yes it does help but it's important to do back exercises as well to keep postural muscles balanced. Strengthening calf and leg muscles will help too, it makes for a strong skeletal pump. I have low BP and I am a ballet and fitness teacher my cardiologist says due to my skeletal pump being strong I tolerate lower pressures than he would expect normally Well I hope one day you manage a few thousand !! Good luck

Hi My first med was florinef I have low bp and I was loosing fluid , in the beginning it helped a bit so they kept upping my dose to 3 tablets a day as every few months i would improve then decline rapidly again, this went on for a year .after another six months finally I was referred to a pots consultant . He switched me to midrodine which has improved my pots as VVS a lot. He did mention when we were chatting that he found florinef effects seemed to diminish over time on many patients. Just my experience though , hope you find a solution

Have you tried rubbing almond oil in to your nails of course as long as you not allergic to nuts ! I have alopecia which affects my nails with ridges and easy breakage, rubbing oil into them daily have really improved them,being doing it for years

Ancy can't help you with your questions but just wanted to send hugs best wishes and good luck to you , hang in there x

They have a patients day in October VVS and POTS are two different topics this year but you can go to any talks you want I am hoping to go Dr grubb will be there ! I am a member with stars and they send up to date literature, worth the membership fee and a way of contributing ! Hope you are doing ok really hot again in Wales today we not use to this weather !

As wintersnow said you have a diagnosis perhaps you didn't get much information how to manage it after your TTT. I too have VVS and POTS and in the UK STARS is a charity in UK that has very helpful information and a helpline where you can talk with a member of their team, they pointed me in the right direction at a time of great frustration and desperation .

,My resting heart rate often drops to 51and is mainly in the fifties it will shoot up to 130s when I first stand and depending how tired I feel will settle or just keep spiking and dropping . I don't tend to worry about it any more my fitbit gives me a rough idea what's going on so I just use the numbers to help guide me to control my symptons, it helps me know how much I can push or not on a daily basis

Yes mine usually is white scales on top and red inflamed below , if you google psoriasis you get pictures of it there are different types hope that helps !

Still can be , I use to only get tiny spots on my scalp 30 years ago now I have bigger ones and more widespread .