dancer65

Hi everyone Hope you all doing ok in these strange times. We are still in lockdown 8 weeks and counting , so I have been using this time to get all those things done I never have the energy for ! I have managed to be very productive as long as I stick to my strict regime. I just wanted to share a story which proves that even when we feel better we have to keep been thoughtful of everything we do ! So I got the garden weeded and planted up and to help with easy maintenance I decided to use bark mulch, I have used this in the past no issues . Due to lockdown I had to use different supplier I picked water retaining bark in plastic bags. Stupidly never checked what was in it ! Long story short I have had blisters, rashes over my eyes and legs, breathing problems and really increased pots problems . I have since found out the mulch was mainly pine, I know I’m very allergic to it, also the bark stunk which apparently can mean lots of mould spores or toxinseven some of the plants weren’t happy after laying it. After researching I have now added nitrogen to the bark and leaving it for a few days that seems to have dissipated the smell, hoping it will now stop my reaction as I really don’t want to have to remove it all ! A lesson truly learnt never stop being mindful of this condition ! stay safe everyone !

Defiantly ! Stormy weather gives me migraines . I have allergies which induce asthma and facial swelling, rashes etc if I don’t remember to take my antihistamines. Last year I was a bug magnet and their bites lasted weeks , they never use to like me so something has changed in my body I reckon.

Thanks for sharing interesting article x

That’s great news I am thrilled for you ! Hopefully this will be continue to you feeling better . Midodrine gave me energy to do more things , exercise more and therefore I was actually tired not just fatigued so my insomnia improved . I really hope this gives you the ability to break the cycle of symptoms so life is not such a fight xx

Thanks for sharing , like you I didn’t understand all of it but it was still very interesting .

Hi pistol cant offer any advice meds as I have low BP so just sending hugs t get better soon x

Very cute !Lovely home you have made . Our cat was a stray whom adopted us 15 years ago . She use to be very much an out door cat but now she is getting on about 17 years old she is mainly indoors and is defiantly the boss , very clever at manipulating us to her every whim !

Hi everyone ! Hope Santa brings you a present of better health ! Take care everyone enjoy the holidays x

Yes as Pistol said it’s one extreme to the other . What has helped me was learning not to get annoyed and stressed about it , I use to get so angry at my body for misbehaving but it just exasperated my symptoms . During episodes I lie down and practise deep breathing relaxation exercises , this has taken a bit of practise to relax and not get distracted. My body temp often is low so I use a hot water bottle and tuck up in bed whilst I practise the above ! Hope you feel better !

I was on florinef for a year it only helped a tiny bit even though I was increased to maximum dose , I piled on loads of weight . I started on 2.5 mg of midodrine and noticed improvements within two weeks but as I increased to 7.5 mg I stopped feeling dizzy when upright that was amazing ! sounds as though you are doing all the right things and learning to give in to the warning signs is the hardest I think , we are a determined bunch ! Really we just have to be 😀 Happy Christmas to you too x

For me the midodrine has enabled me to be upright and gradually to build up exercise and be more active which in turn has helped me get to my Bp more stable. I think I also understand my limitations and I know I cannnot ignore the warning signs , I use to push through those signs and it never ended well . Midodrine certainly was no quick fix and even now I have regular crashes and have to cut down on my activity, it’s a balancing act I often misjudge . however 5 years ago I was not working and unable to do simple tasks , now I work full time and take care of my home ! I haven’t fainted in about two years I know as soon as I feel hot I need to stop, down a glass of ice cold water and lie down to stop the faint !So I believe it’s a combination of things that help but midodrine was and still is the mayor influence . I hope this makes sense not having a great day , brain fog !!

Hi i teach dancing to adults and kids I take 7.5 mg x3 times a day so I time it that I take a dose 1 hour before I start my classes I also load up with electrolytes . This keeps me going for about 2 hours. I have VVS and POTS .

I use to have Bowie posters as a kid , loved him! Yes slowly getting better like you fatigued and I am hoping I will feel enthusiast about Christmas soon !! enjoy your mince pies, yummy ! X

Thanks pistol for that info ! Interesting because I then went on to get a virus whilst taking antibiotics , husband was happy I lost my voice for 3 days 😁 how are you now p8d?

He did a talk on POTS, the reason I went to his health conference . In my opinion he knows his stuff ! But as I say I am not his patient so I have not had a consultation with him . I did talk one to one with him and he gave me some very good advice . The link you posted is where he advertises his live chats . He is a cardiologist so as far as treating other issues I really don’t know , you would have to enquire. Usually in the UK you see different consultants for different complaints , that’s how I have been treated. However I do know Dr Gupta understands the connections Yes I do have autoimmune diseases and had to have hysterectomy due to endo , cysts and friboids so I really don’t know how to shrink endo cyst sorry

I recently had an infection in my jaw bone I was strong penicillin for a week . I felt like I had a temperature but in fact my readings were 35. To 36 .8 . C I did read somewhere that the body will react with high or low temperatures to make a hostile environment for the bacteria , it makes sense but I doing low how true it is. hope you feeling better soon x

My pleasure! Dr Gupta also has a close association with Simon Smale a gastrentologist who is high up in his field.

I live in uk and have been to two of Dr Gupta health weekends . He is a cardiologist at York hospital .I was already referred to another cardio before I met Dr Gupta so I am not actually his patient . What I can tell you there are plenty of patients who really like him, I know this from a Uk POTS forum I have spent some time with him . He is sympathetic, kind and listens . If you join his Facebook group he also does live chats where you can personally ask him questions . I hope this helps

Hi I had knee surgery last Thursday under general anaesthetic, like you I was so nervous as I was very ill after my hysterectomy, at that time I was undiagnosed but very symptomatic. My anaesthesiologist didnt know about POTS. Due to lack of fluids I arrived at hospital with a full blown migraine. The staff were amazing and listened to my husbands explanation of POTS and it’s management resulting in me being taken to the ward and being given fluids before my op. I had to walk to theatre so by time I got there I was in excruciating pain from the migraine. They asked for my hand and said pain killers going in and the next thing I awoke in the recovery room! I have a history of panic and hitting out as I come out of anaesthetic so I had forewarned them, my first words were did I hit anyone and the nurses laughed no we left you to come around on your own ! I made them aware of my high adrenaline so pain and nausea could be a problem . My Bp also crashes. I woke up without any pain, no nausea, no panic and feeling like I had just been asleep. I do think that anaesthetic has really improved.i went to theatre at 1.45 pm and was on my way home by 6 pm. Interestingly my HR was normal upon standing for two days after surgery I am sure that was due to fluids. The staff were just amazingly kind and listened to what would help so I have written to thank each department . Hope this helps x

You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog . I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend !

I feel for you trying to get out of area funding it’s so hard to fight when you are not well ! It’s exhausting I always find you never have the right phone number and get passed around departments ! I know someone who had a cfs leak I think she was treated in Birmingham she is back to work as a carer for a disabled client . I just hope you get this sorted ASAP !

Really pleased you have at last found some answers I hope all goes well for you from now on !

Radom symptom man have you thought about keeping a dairy ? I logged everything and found this very useful over time, I started to see pattens That triggered symptoms, syncope, PEM, and it helped me remember meds and to drink. It was also helpful reference for notes to make when I attended appointments as brain fog often made me forget important information.

I agree with Pistol it’s about how you feeling it’s easy to get to checking vitals all the time . My consultant told me not to rely on the numbers but to listen to my body .

I have been complaining about symptoms for years but after fainting numerous times my own GP suspects POTS. I waited almost two years before I was seen at a syncope clinic . I’m in UK . I couldn’t afford to go privately because here if you do you have to pay for all the tests and any medication prescribed., l also wasn’t working . I know it seems like every day is an eternity .