Acupuncture

[Tricia49]

Dear All

I’m a 65 yrs woman having suffered 2 heart attacks and undergone a 5 graft heart by-pass in 2006. I have a slightly leaking mitral valve and take various meds to control this and high blood pressure. My breathing can still be laboured especially in the wet and cold conditions although it’s improved since I stopped taking statins in October 2013. I’d complained to my doctor for years about aching joints and legs, and suggested the taking of Statins was the cause. He dismissed my claims stating because my Cholesterol total was approx 4 I needed Statins, although did prescribe a different type which didn’t improve my aches and pains. Since giving up the Statins my joint aches have slowly improved and my breathing became easier which is welcomed.

I started with shaky legs syndrome approx 3/4 yrs ago. For 2 ½ yrs my doctor diagnosed ageism. Eventually I persuaded my doctor to refer me for thyroid problem tests, which proved negative. My husband Michael searched the web until finally in October 2013 discovering a paper written by Dr A J Larner of Liverpool England detailing Primary Orthostic Tremor (POT). I emailed Dr Larner who advised arranging a check up at my local neurology department. Having not received an appointment locally by February 2014 I re-contacted Dr Larner and was granted an appointment within 2 weeks. Dr Larner immediately recognised my symptoms as POT and arranged for Electromyography (EMG) test, which proved positive.

By now I was consulting a different doctor within the practice and Dr Larner wrote to him with his diagnosis and suggested prescribing Gabapentin or Levodopa as these have sometimes given relief but not in all cases. Realising the possible side affects of these meds I refused to try them for a few months. Eventually in August 2014, I decided to try the Gabapentin and scrupulously adhered to the prescribed dosage regime. Unfortunately after 5 weeks and before reaching the full dose I was becoming irritable, moody, bad tempered and had increasing weight which isn’t good for my heart. So with my doctors approval I started to reduce the dosage to zero this took a further 5 weeks. Whilst taking this drug I didn’t feel any benefits, but now feel they may have worsened my symptoms, although this could be due to other factors.

I’m ok whist walking about but as soon as I stand my legs shake and if holding anything my arms also tremble. Working in the kitchen can be challenging sometimes worse than others. I manage ok at the gym but find difficulty when showering and use a hand rail to steady myself. I use a stick and seat/stick these help take the strain and find myself leaning against counters or whatever for support when out. Weather conditions affect the severity of attacks cold being worst.

Realising there is no known cure or medication to treat POT, earlier this year I decided to seek alternative remedies initially with an English acupuncturist. For the past 6 weeks I’ve used a Chinese acupuncturist who as well as inserting needles in legs and head also performs a head to toe massage. I feel a positive outcome after each session although Dr Wang admits my symptoms aren’t easy to resolve although he feels he can improve given time.

Considering my own experience with Statins and after reading many negative reports that they can be detrimental to overhaul health I blame them for causing my tremors, although no doctor will agree.

It seems in Great Britain most doctors don’t have knowledge about POT therefore are dismissive and diagnose ageism. If it wasn’t for gaining information via the web it’s my belief I’d never been correctly diagnosed.

My question is, I’d appreciate knowing has anyone tried acupuncture or other alternative therapy and if so with what outcomes please?

Thank you for reading my epic and let’s hope collectively we can resolve some of the symptoms with this terrible disease.


Kindest regards

Tricia Mallin
Sheffield
England.
23 Dec 14

[Nin]

I've had acupuncture and massage for quite awhile. Although it has helped many things, I don't think it has helped the tremors.

[Tricia49]

Hello Nin

Thanks for quick reply. I realise being darted is a slow process, but feels its worth a good go. I'd rather use this than try different meds. Are Statins prescribed in the USA with the regularity they are here in GB? Keep well and enjoy Christmas.

Kindest regards

Tricia

[gloria]

Trica: Thanks for the complete introduction of all your health issures and treatments plus the time that you started with OT symptions and now medically diagnosis including an EMG to confirm. Will be interested in knowing how your experience with acupunture continues. Gloria

[Nin]

I've also been taking statins (they are prescribed a lot in the US) and have tried at various times stopping it and other meds that I take. Unfortunately, none of it has seemed to make a difference with the tremors except Clonazapam (Klonipin). My next try is going to be prism glasses which 3 people have tried and it has helped all 3. Unfortunately, I'm going to wait until spring for that because I'd like to go out and see the same Doctor Jane Vece has tried, but don't want to do it in the winter as I'll probably drive and don't want to chance bad weather.

[Tricia49]

Hi Gloria

I believe it helps to have a full as possible health picture to establish the facts. I intend to keep being darted for a while and hopefully it will help. I'll keep you guys updated as I a go along. Take care and enjoy Christmas.

Kindest regards p- Tricia

[Tricia49]

Hello Nin

Thanks for replying. I've read about the prisms and intend asking my optician to keep them out. I look forward to hearing you've had a positive result. I stopped the Statins due to problems with my joints, and whilst it did take a few months my joints did improve. The improvement in breathing was unexpected but its been explained to me that the heart is a muscle therefore they could have been causing an adverse affect. I'm not a fan of Statins they do have many side affects. Problem in GB is our government have just decreed more folk should be prescribed them I suppose to make themselves look good. If I seem sceptical its because I was misdiagnosed in 06 with Asthma when in fact I had Angina and the medication and doctors exercise recommendations brought about my first heart attack. Enjoy Christmas and I'll keep you updated.

Kindest regards - Tricia

[brittasmom]

Tricia, I have been going to a chiropractor for adjustments and acupuncture for the last 3 weeks. I told him of my OT and how the prism glasses have helped me. With the prism my tremors have greatly decreased but I still struggle with balance. I was hoping that the acupuncture would give me some relief for that, but I can’t say that it has so far.

Next I’m going to try the deep massage. I have tightness from the right side of my neck leading up to my ear and eye. Sometimes I feel that is the cause of my balance problem.

I did learn by x-ray that my spine is curved, scoliosis. That’s the same reason that Jane went to Dr. Padula in Connecticut. He prescribed prism glasses for that condition and to her surprise it also gave her relief of OT. So now I am thinking, is there a connection with a curved spine, eye movement, the brain and Orthostatic Tremor.

Nin, I am so glad that you will be traveling to see Dr. Padula in the future. Keep us informed of your experience.

Nancy

[Tricia49]

Hello Nancy

Hope you enjoyed the festivities. Sorry to hear you've no improvements but I feel any acupuncture is a long term treatment. My acupuncturist Dr Wang isn't available till the new year and I'll be ready for a session by then, I intend mentioning that. When Dr Wang first massaged my legs it was very painful and they ached for a few days, but I'm finding easier as the sessions go on. I was told years ago that I'd a slight spine curvature, so thanks for mentioning it. The prisms seem to be helping so I'm going to ask here in GB anyone knows about fitting them although I realise because POT is very little recognised here it wont be answered easily. Sorry you are still becoming dizzy I don't suffer this side effect but appreciate it must be horrible. I take it you've had your inner ears checked and checked your blood pressure?

Enjoy your New Year

Kindest regards

Tricia

[gloria]

Trica: I was just wondering if the massaging of the legs you are having with Dr.Wang might be called myofascial release ? I had that treatment many years ago and remember I could hardly walk out of the office to my car. I did give them up after a number of trials. Maybe what you are having is not the same thing. Thanks for your informative postings. As I have said for years we learn the best from each other. Gloria

[lla]

Hello Nancy and all,

I found it very interesting that Jane and you both have scoliosis. My MRI also showed that I have scoliosis. Hopefully, through all we are learning, we will be able to find more answers!

I am doing much better with the prism glasses. Some days I don't have any tremors and don't think about them at all. I still get anxious in social situations, but nothing like I was before the glasses. I have only had one episode with my balance. I felt like I was going to fall backwards. Had never experienced this before and it startled me. Hoping this was a one time thing.

Having the prism glasses has been a blessing to me! They have changed my outlook on life and I am doing things I haven't done in years.

Let's keep in contact!
Linda

[Tricia49]

Hi Gloria. Not sure about the type of massage but will certainly ask him next week and let you know. Not sure If I mentioned my legs get affected by the cold weather and stress which is sometimes difficult to avoid. I have bought an adjustable ironing seat which is helpful - can't get away with the ironing now, hehe. Well Happy New Year, keep smiling. Tricia

[Tricia49]

Hello Gloria, I asked Dr Wang about Myofascial release, and he says the type of massage he uses is very similar to yours. So I am hoping given time it will have some effect. He tells me that I am improving a little. It would be a lot easier to pop a pill, even though I don't like taking any medications. I haven't been in contact with my option regarding the suggested prism lens fitting as yet, that is another avenue to explore.

Take care, kind regards
Tricia

[gloria]

Trica: Thanks for asking Dr. Wang if the massage he giving you was the same as Myofasical release ....I will be interested to know if his treatment with you has positive results. Looking to find things that will ease OT is good even thou they might not be a cure... My station in life is fighting back at OT by learning coping skills to work around it so I can continue living with as much independence as possible. Keep us posted, Gloria

[Macob75]

Yeah, I have also got acupuncture therapy for this problem. It really helped me dear. I got the treatment from acupuncture Mississauga clinic. So I suggest you too to get your treatment from there.