New to forum can anybody help me urgently please!


#1
Hi everybody

I was diagnosed with parkinsons three years ago now and cervical dystonia which affects my neck muscles and makes my neck and head to the right. I get botox every three months to release the muscles (well i am superpose too but i have had to wait 26 months for this next injection!!) I have started feeling like i cant swallow and then cant breath, so i start breathing rapid and panic, this then leads to me loosing control of my parkinsons and my body starts to go rigid and move all over the place, the feeling is so unpleasant and i panic, it can last about 4 hours if not longer and it is truly affecting my life so much now.

I suffer with sever depression which is under control, but i'm scared that the way i feel at the moment it is going to get out of control again. As i write, I am struggling for breath and to swallow. I am starting to feel woozy all over and thats when it all happens - i am trying so hard to control my breathing but its not working OH GOD CAN SOMEBODY PLEASE HELP ME!! PLEASE, I'M FALLING APART.

#2
Hi Sharonc - i think you just need to concentrate on your breathing and try not to panic and things will settle down again. If not, perhaps you should phone NHS 24 for some advice, you may be able to speak to a Doctor.
Take care
Lizzy

#3
Hi SHARONC Please try the helpline number above. A nurse will speak to you or they will get back to you a.s.a.p. Some of your symptoms (apart from the PD) sound to a non-expert like panic attacks which are linked to rapid shallow breathing linked to anxiety and you don't appear to be getting anything like the support you need.
The following is cut and pasted from PD uk's leaflet: What does NICE say about diagnosis and check-ups? NICE lays down government guidelines for medical treatment. (I got this via the advice button at the top of the page. NICE lays down government guidelines for medical treatment.)

" NICE says diagnosis should be made by either a
neurologist or, for older people, a geriatrician with
expertise in Parkinson’s. If your GP suspects you
have Parkinson’s, they should refer you without
delay to one of these consultants before starting
you on any medication. It is recommended that
you should see a neurologist or geriatrician within
six weeks.
The Guideline recommends that you have checkups
with a neurologist, geriatrician or PDNS every
6-12 months to ensure your diagnosis is correct
and to monitor your current treatment.
Information and choices Your healthcare professionals
should help you to make decisions about your
treatment and care, provide information and talk
you through your options in an honest and realistic
way. Information for your family and carers including
their entitlements and support should also be
made available.
You should also be given the name of a person
that you can contact if you have any questions or
concerns, such as a Parkinson’s Disease Nurse
Specialist (PDNS). A PDNS is a nurse with specialist
knowledge of Parkinson’s. They can provide regular
checks to see how your medication is working,
information about Parkinson’s and the symptoms
you may be experiencing and help with referrals
to other health professionals.
You can ask your doctor if there is a PDNS in your
area, or alternatively call the Parkinson’s Disease
Society (PDS) Helpline to locate your local nurse.
If there is no nurse specialist in your area you should
have access to another health professional who can
be your regular point of contact, providing the same
level of care as outlined above.

#4
:cry:HI LADIES THATS FOR REPLYING I DONT WANT 2 FONE NHS AS THEY WILL TAKE ME IN2 HOSPITAL AND I HATE IT. I AM NOW EXPERIENCING A POUNDING FEELING ALL THROUGH MY BODY AND MY HANDS HENCE 1 FINGER JOB HAVE CRAMPED I AM SO FED UP I CANT DO THIS ANY MORE, I SHOULD HAVE MY BOXOX EVERY3 MONTHS AND I HAVE HAD TO WAIT 26 WEEKS SINCE MY LAST ONE I AM IN CONSTANT CONSTANT PAIN. I DONT KNOW WHAT TO DO = THERE IS ONLY ONE PARKINSONS NURSE FOR THE NW AND U CAN NEVER GET 2 SEE HER.

#5
Phone the P UK helpline. If it's really bad you should phone nhs whatever. If you can wait until tomorrow then first thing phone your GP for an emergrncy appointment. Whether it's PD or panic you need to see someone.

#6
Hi Sharonc,
I am very sorry to hear of your difficulties. I suggest that you follow up the suggestions above and try to get referred to a speech therapist. They are also trained to assist people with swallowing problems.
Regards,
Weedy

#7
As you all know, the aim of the forum is to provide users with a positive space in which you can share experiences, exchange views and engage in debate and discussion. This includes discussion on issues of health and well-being. However, in the case of an emergency, it is not a suitable place to obtain medical advice.

If you have an emergency situation, please contact your GP or NHS direct on 0845 46 47.

In non-emergency sitations, you can also contact our free and confidential helpline on 0808 800 0303 from Monday to Friday 9am to 8pm and on Saturdays from 10am to 2pm and speak to one of our skilled nurses or specialist advisers.

Thanks,

Alex

#8
Hi SharonC

I was relieved to see the moderator's post above. However I feel the need to explain that I urged use of the helpline exactly because I was sure that a reassuring voice/ qualified person would urge you (SharonC)to contact your doctor whereas it seemed to me that you might not as you mentioned a fear of being taken to hospital. The other information I quoted might be of some help in insisting on more support which you seem to lack.

#9
Alex, Moderator

Can you please tell me whether in what seems to be an emergency you or anyone else could contact the person in distress directly?

We all know we can call a doctor, but SharonC does not seem to be getting the treatment or support which she is should get - hence an appeal to the forum. I can only speak for myself but I certainly recognised the panic although, thank goodness, I have never suffered an actual panic attack . When I read up the symptoms last night they are really frightening.

#10
:imp: Hi all, I went to see my parkinsons consultant yesterday for my botox for the cervical dystonia, clearly, he could tell i had got worse and i explained about what was happeening to me. This is now been going on for months, for constantly for the past 4 days, i can swallow but feel like i have something in the back of my throat, so when i try and swallow i cant breath and start to panic. Hence, i then probably have a panic attack and my body start to become rigid and i have been like this constantly for 4 days, i am so tired and sore all over, i know im not going to die but feel like i am. He just looked at me and said nothing. I am therefore, going to look for a new consultant I am fed up with not being listened too even if i have to go private. Thank you all for your brilliant help - does anybody in Merseyside know of a better consultant and please dont say Dr Stiger!! THANKS XXX

#11
Thanks for your posts on this thread. Users have been very supportive and that’s important.

Forum moderators are not medically trained and we’re not able to deal with health emergencies. We added the information above to encourage forum members to use the free confidential helpline when you need non-emergency information and support.

The posts here were correct in suggesting that the user in distress contact the helpline. There, we can offer information on getting the support they need. But we don’t normally contact users of the forum if they don’t request contact.

The forum is meant to be a safe space for conversations between users and so we try stay out of those conversations and focus instead on making it a welcoming place. We’ve felt that the best way to do this is by not responding to posts directly.


We’d love to hear feedback on what you think about this.

Moderator

#12
Hi SharonC

Glad to see you have been able to move forward a little and decided on a change of specialist. Several people have told the forum that they have requested a change of specialist via their GP and it does not seem to cause any problems.


Best of luck

#13
Hi SharonC,


Just read your posts you seem to be very distressed. Are you on medication for the PD? If yes what are you taking? Maybe it doesn't suit you. Why did you wait this long to post maybe somebody could have given advise before you got to this stage? Are you ok now?



Tulip

#14
Alex/Moderator

Responding to what I think you mean, it would probably not be a good idea for the moderator to respond via the forum but my query was whether in extreme cases the moderator (or other responsible person) could contact the person direct? That way it would not be any part of the forum as such and no one would expect it to be but the onlookers might feel better if they thought monitoring included such a reaction. Obviously its subjective as to how much of an emergency there is and may be impractical for reasons unknown to me such as privacy/data laws.

#15
Sorry people but it’s always the same old answers and that is go seek medical help. That is not enough. Here we have a person living in fear, and that fear is becoming her worst enemy. What you have to do Sharon is overcome the fear and start living, start having fun in your life. Start looking for an interest and don’t let your illness drag you down. Lots to do in Merseyside or even better over in the whiral. You do not mention if you’re on your own, do you have family and friends that you can talk with. Believe me when you start facing up to this it gets better but you are the only one who can do that. I lost everything when I became ill and I know it can be severely depressing but you can overcome it all and bounce back and it is hard work doing so , try avoiding situations when you most often get panic attacks, keep your mind occupied and working. Try heat pads for your neck or keep a warm scarf around it, I know it can be painful, my neck down the one side used to go solid and painful but it did pass with massage and heat and now I very rarely get such, my only real problem now apart from the strokes and heart problems is constipation, still haven’t cured that lol pain in the but lol. You know the saying and its true, laughter is the best medicine. Take care and keep swallowing the tartan tablets or whatever they have you on.
Ps don’t be scared of dieing been there bought the t shirt a few times and it is real so stop worrying and enjoy this life first.

#16
Hello Sharonc. Having read your thread I found it very interseting because I too have the same specialist as you. If you do find another neuro specialist please let me know because it is clear that we both feel the same about him. Please keep me informed

Regards
Glenchass