NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Suicidal thoughts and depression — the new vid is out — What are your thoughts?
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capri.
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November 17, 2012 at 11:41 am #349
Dr. Diana
KeymasterDr. Diana discusses depression and suicide ideation — two very common symptoms in dysautonomia and numerous invisible illnesses, including M.S., EDS, fibromyalgia, chronic fatigue or “M.E.”, rheumatoid arthritis, lupus and endometriosis. Always reach out for help if you experience this symptom, and understand it is a reversible symptom.
November 17, 2012 at 12:29 pm #3143Julie52
ParticipantI believe MY depression is a symptom of my disease (MS) and not a reaction to having my disease. Antidepressants do help.
When I describe various symptoms to different doctors, normally my frustration is that they automatically assume it is my MS. But with depression they assume it is strictly psychological.November 17, 2012 at 7:04 pm #3144jillMEnz
ParticipantThank you for this video Diana. I can relate totally. In fact I wouldn’t cope if it wasn’t for prozac. But, as you say I observed the depression “as symptom”, well before it became chronic. It was like it dropped out of the sky, and it would go away just as quickly. It still does that now, despite the prozac. I have to say to myself ” this is just another symptom, and like all the other symptoms, it too will lift”. Mine cycles very fast as if bipolar as you say. It isn’t bipolar, but I have a friend with bipolar and I really understand him. When I was going through my divorce, you would have thought it would have brought on depression. I certainly couldn’t cope with all the legalise (like I had brain injury) BUT the depression didn’t hit. It truely is so cruel. The flip side is the anxiety. If people can understand that people with brain disorder (eg stroke, brain injury) can get like us, then I think it is half the battle. We just need to be listened to and heard for what these symptoms are – thats all. They are symptoms.
I really feel for those people who wrote in to you. It is so very hard. Please hang in there all of you. Don’t be afraid to try medications. You may have to do n=1 trails if you are sensitive, but don’t give up on medicine. Its our bodies as much as our brains that lack the good chemicals. Its nothing to be ashamed of. Your drs sound horrid. Its like they have left their hearts at home. You are safe to write about it here.
my love, Jill
November 17, 2012 at 8:08 pm #3145Dr. Diana
KeymasterI believe MY depression is a symptom of my disease (MS) and not a reaction to having my disease. Antidepressants do help.
When I describe various symptoms to different doctors, normally my frustration is that they automatically assume it is my MS. But with depression they assume it is strictly psychological.Julie52, I agree 100% that the depression is indeed a symptom. Absolutely. Certainly, the circumstances don’t help, but I strongly agree that this is a symptom of imbalanced brain chemistry (I believe possibly secondary to brain inflammagion?). We understand that for many of us, our blood brain barriers are wide open. NOT GOOD. Thank you for sharing your thoughts. Big hug, Diana
November 17, 2012 at 8:12 pm #3146Dr. Diana
KeymasterThank you for this video Diana. I can relate totally. In fact I wouldn’t cope if it wasn’t for prozac. But, as you say I observed the depression “as symptom”, well before it became chronic. It was like it dropped out of the sky, and it would go away just as quickly. It still does that now, despite the prozac. I have to say to myself ” this is just another symptom, and like all the other symptoms, it too will lift”. Mine cycles very fast as if bipolar as you say. It isn’t bipolar, but I have a friend with bipolar and I really understand him. When I was going through my divorce, you would have thought it would have brought on depression. I certainly couldn’t cope with all the legalise (like I had brain injury) BUT the depression didn’t hit. It truely is so cruel. The flip side is the anxiety. If people can understand that people with brain disorder (eg stroke, brain injury) can get like us, then I think it is half the battle. We just need to be listened to and heard for what these symptoms are – thats all. They are symptoms.
I really feel for those people who wrote in to you. It is so very hard. Please hang in there all of you. Don’t be afraid to try medications. You may have to do n=1 trails if you are sensitive, but don’t give up on medicine. Its our bodies as much as our brains that lack the good chemicals. Its nothing to be ashamed of. Your drs sound horrid. Its like they have left their hearts at home. You are safe to write about it here.
my love, Jill
Thank you so much for reaching out to others, in the midst of your journey, JillMEnz. That takes a special person. I love what you said about n=1 trials. 😉 And yes, some of us have had some horrid doctors, sadly. Twenty years from now, I think the medical field will look back in horror. Until then, yes, let’s keep reaching out to each other. Big hug coming atcha’, 🙂 Diana
November 19, 2012 at 9:17 pm #3153Barbara
ParticipantCrikey stretchy silver – what a terrible place to be and I don’t just mean in the literal sense but with regard to the progression of treatment (or mis-treatment). Although I haven’t had such a terrifying experience (because I can imagine how it must have been, by how you describe it, being locked up) but I have had a pulmonary embolism which drastically affects your breathing, so from that experience I can empathise with how you must have felt.
It’s bad enough no-one taking you seriously whilst suffering from all this, without them also trying to rob you of your integrity and dignity. In fact, one of my son’s nicknames for me is ‘in-valid’ because of the way I’ve been disbelieved and treated with disdain by the NHS.
I do know what you mean regarding NHS treatment, I too am from the UK and have had to pay several private hospitals and institutes for private testing (indeed I’ve had to remortgage my house to pay for it all – I stopped counting at £40,000, it got too depressing!)
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!November 20, 2012 at 6:36 pm #3155Dr. Diana
KeymasterOh, Stetchysilver, what an amazing story! Well, you don’t have to worry that we won’t believe you! Heavens! I, too, was labelled a “problem patient”, but unlike you, I pulled out my “Crazy Lady Stick” and argued back at the doctors! (I get that from my mom. ha.) I KNEW they were WRONG. And when it hit my 8 year old son, completely disabling him, well, there was no way that is a psych case. Good grief. I’m SO GLAD you made it through that nightmare. Hang in, my friend. This is very treatable, and we won’t be using “anti-depressants”. We will be hitting the CAUSE of the disorder. Sound good? Big hug…
November 20, 2012 at 6:47 pm #3156Dr. Diana
KeymasterI did watch the video. I relate to it so much. It does come in waves and leaves as quickly as it starts. The problem is when it comes and I am already up against a struggle that is beyond my ability to control it drains away what little fight I have left. It comes when things are looking up and still feel that way from time to time. Its easier to shrug off when things are going better.
My experience with doctors and different hospitals is I/we are just to complex to try and treat and would be happier if we left their practice, either naturally or unnaturally. I can honestly say there is no resistance here locally if you chose to opt out of this life because it gets to be too much. I almost would say it is encouraged.I have a suggestion for you, Robert, that really helped me. You’ve experienced this coming in waves, right? I had to make an agreement with myself that when I was experiencing it, I would sleep, listen to comforting music, take Benadryl to help me sleep, basically do what I could do until it passed. It always passed. I had to reassure myself every time it hit, that it would pass, just as it always did before. It reminds me of when I used to jog — I agreed with myself to never stop running if I felt like I needed to stop, if I was running up-hill. I promised myself to wait until I was running down-hill. THEN, if I still felt like I needed to stop, then I likely needed to stop! Of course, only rarely did I need to stop then! If you can accept that these waves will happen and know you will gut them out — they WILL pass. When we get on the proper meds, we will stop these horrible waves, OK? Meanwhile, get out those water wings so you don’t go under! I HAD to have a relaxation CD and a sleeping pill or Benadryl to just gut it out. It worked. Whatever chemical was hitting my brain basically “washed out” while I was sleeping. Understand that if doctors have patients with conditions that they have no idea how to treat, SURE, they’d feel some relief if that patient’s name wasn’t on their schedule! That’s only human. I think most docs want to help, but they don’t know how. This is why we have research and clinical trials. I am working as hard as I can to pull this together, so we can start proper treatment. It will all make sense, then, and doctors won’t dread seeing us come into their offices! Hang in my friend…
November 23, 2012 at 9:36 pm #3163jillMEnz
ParticipantHi Robert,
I saw the other day that you could buy diamox off the internet. I just can’t remember the site right now. It was one where you could also buy ketotifen. I think it was a canadian one- it maybe that you need a drs prescription though. Its terrible how you’ve been treated. We have a lovely doctor who will try anything as long as he can prescribe it and if its specialist only we can get him to write a script and pay out of pocket for the item, just to try it. We couldn’t be luckier.
If we’ve got heart rates changing like that , our brain chemistry is bound to be screwed up by it all. All at once the body is asking for adrenalin, then its saying “no, no!”. What does adrenalin do – it makes you feel anxious. All this gets delayed and is cumulative in POTs so its no wonder we get so screwed up and are interpreted as anxious. Anxiety too will effectively feed this loop.
When I get the waves of depression I too lay down and I have a playlist of Desert Island Discs. This is a radio show (on itunes BBC, archived right back to the 1960s) where famous authors , actors, comedians who-ever are interviewed. For some reason listening to other peoples stories I find really comforting. Just a thought.best Jill
December 9, 2012 at 5:52 am #3202capri
ParticipantI could relate very much to the video. Thank you for having the courage to express what so many of us deal with.
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